In Baby and Me, parents craft a lullaby for hospitalized infant

By Louise Kinross

When a child is born premature or with serious medical problems, parents’ plans go out the window. Instead of getting to know each other in the relaxed and quiet safety of their home, parents sit at a hospital crib, unsure of how to interact with the newborn beneath the wires and noisy equipment.

While their baby is in intensive care or rehab, parents may miss some of the most basic bonding experiences.

For example, a mother attending Holland Bloorview’s new Baby and Me program, noted that when she lay down beside her child on a mattress in the program, it was the first time she’d ever snuggled in bed with her baby. The baby was seven months old.

One morning a week, inpatient babies up to 18 months and their moms or dads meet in Holland Bloorview’s music therapy room for 45 minutes of creative arts psychotherapy, which includes art- and music-making.

“We started the group to facilitate creative and playful opportunities between caregiver and child,” says Eunice Kang, a registered psychotherapist and music therapist at Holland Bloorview. “We offer a means of coping with trauma and help parents connect to their infants through song writing and creating art. It’s an opportunity to stop and take stock of their journey so far—to talk about the difficulties and celebrate the achievements.”

The session begins with parents playing soothing bells of different pitches. They then choose to compose a personal lullaby for their child, called a "song of kin," or paint and decorate a piece of canvas to honour their baby.

Eunice and Andrea Lamont, also a registered psychotherapist and music therapist, learned the "song of kin" technique from Dr. Joanne Loewy. Last year they attended Dr. Loewy's continuing education program in the neonatal intensive care unit at Mount Sinai Hospital in New York City. They then worked with Shawna Perkins, Holland Bloorview's therapeutic playroom coordinator and art therapist, to adapt the techniques for the growing number of infant patients we see here.

For the lullaby, parents are asked to choose a favourite family song, then work with Eunice and Andrea to create meaningful lyrics for their child. “The baby has experienced a lot of stress being in new hospital environments, and we know that listening to Mommy or Daddy sing to them will help the baby regulate their emotions and bond,” Eunice says. “While we’re making the lullaby, we listen to the family’s concerns and issues. It’s a quiet time, with no beeping alarm sounds or interruptions, that can also be emotional and cathartic for parents.”

In addition to the lullaby, parents and babies work on their art canvas with Shawna, adding patterns and textures and photos of the baby. At the end, Shawna takes a picture of the child and superimposes it on the canvas, adding the lyrics from the family's lullaby as a border.

The facilitators play instruments to accompany parents singing their lullabies. “With their consent, we record the lullaby and send it to their e-mail or phone,” Eunice says. “Some of the families tell us they cry the first time they hear it, and they cherish the moment they share it with the baby.”

For more information on the Baby and Me program for inpatients, please contact Shawna Perkins at ext. 6268. This project is funded by donors through Holland Bloorview Kids Rehabilitation Foundation.

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Two moms, one ill baby, and the best care

My dear friend Janis Purdy is speaking today on a SickKids panel celebrating PRIDE week. Here she writes about parenting a child who was born with serious medical problems and the hospital care—often kind and empowering and sometimes challenging—she and her partner experienced as two gay moms. Thank you Janis! Louise

By Janis Purdy

I remember all the people and intensity in the room when Jonny was born. I remember him being whisked away from me and wondering if I would ever hold him.

I remember touching his hands and feet. I remember his omphalocele looking bigger than his body. I remember his curved spine, his yellowish pallor and his old-soul eyes.

I remember his isolette, his PICC line, his NG tube, the IV in his head, his wound dressings twice a day. His daily dose of medications. His failure to thrive. I remember infections and green bile and TPN.

I remember a spontaneous bowel perforation. I remember emergency surgery. I remember praying desperately. As Anne Lamott writes, all my prayers were either “Help”, “Please” or “Thank you.”

I remember six long months in the NICU.

I remember two open heart surgeries, chylothorax, chest tubes, pain in his eyes, and a hernia surgery. I remember three months in the cardiac intensive care unit. I remember the NJ tube, low tone and the discharge plan.

I remember all the good, smart and kind people. I remember the sharp looks, the insensitive comments, the mistakes.

I remember leaving Sick Kids. I remember being so happy and so scared at the same time.

I remember emergencies and admissions and back and forth and in and out for a year. I remember feeds every three hours around the clock and dressing changes and meds that got stuck in his tube and I remember being very tired.

I remember his abdominal closure surgery. I remember a nurse in the surgery recovery room bringing him a brand new Thomas the Train toy.

I remember little friends who got better and some who didn’t.

I remember how much Jonny always loved his big brother. From the moment they met. And I remember his remarkable will to live and his incredible spirit of life and love.

I remember OT and PT and speech and language and oral aversion. I remember being completely humbled by Jonny’s strength and endurance.

I also have different memories that relate to today’s topic: Insights and Ideas for Creating an LGBTQ Positive Space at SickKids.

I remember growing up being taught that lesbian and gay people were dangerous to children. And that trans people were mentally ill. I remember a lesbian who lost custody of her children when she came out. I remember hiding and covering up and feeling ashamed.

I remember a nurse in the NICU asking if Diane and I were married. I remember that opened a door to a lovely conversation.

I remember a nurse practitioner in the NICU asking me, of my older son, “Does he call you mommy or mama?” It showed a wonderful level of insight.

I remember introducing our children’s biological Dads to the staff, and their grandparents, and their aunties and uncles of all genders and being amazed at how nice they all were in trying to understand and support our unconventional family.

I remember the receptionist calling Diane, Mr. Purdy once. She was so apologetic when she realized her mistake. Like red-faced and tripping over herself. I felt sorry for her. I began to call Diane Mr. Purdy after that as a joke.

I remember an older nurse sharing that she was gay too. That was nice and it helped us feel understood and comfortable. I appreciate that she shared that confidence in us.

I remember a younger nurse discussing the finer angles of lesbian motherhood with us.

I remember a GI doctor we’d never met before. We were not having a good day and he walked into our room without knocking, as they are want to do. “I’m Doctor X” he said looking between us. Then he asked, “Who is the mother?” I responded “We both are.” He seemed irritated. “Who is the BIOLOGICAL mother?” Instant tension. My partner tried to diffuse it with a joke “It sounds amazing but we both are!” He looked at her without smiling. “Who are you and why do you need that information?” I said. Sound of horns clacking. “There are many medical reasons we need to know who the biological mother is.” That was a bad start. Hard to get over a bad start.

I remember a social worker in the cardiac ICU asking us the kindest, most thoughtful questions about our family situation. She was concerned about whether we had enough support going home. Gender was not an issue.

I remember sometimes feeling angry at the world and dark and ready for a fight.

I also remember feeling so lucky and thinking, if anyone can handle this, we can. With our age, our experience, our families, our friends, our financial security, our good health… we’re going to be able to handle this. I remember thinking, Jonny chose the right family. And feeling so grateful.

I remember meeting moms and dads from all over Ontario, from little towns here and there and some who were very religious and some who had never met a lesbian before but it was all okay because here we were all surviving and hanging in there together. It was all about the kids and the diagnosis and the treatment and the prognosis.

I met people at SickKids, and made friends here, with people I’m not sure I would have crossed paths with in any other way. And that was good for me.

I remember a doctor here, someone I deeply respect, and will always love in a kind of hero-worship way, telling me that he thought Diane and I were great parents. I think I burst into tears, which would have been disconcerting for him, but that is how much I appreciated what he said.

When you grow up thinking you can’t or won’t be a parent, or you’re holding onto an ancient fear that other people will judge you, or dislike you before they’ve met you, or when you’re used to fighting and you’ve got your dukes up for no good reason, those little compliments and small indications of care, and empathy, well they can blow up your well-constructed walls and bring down all your defenses and really soothe your soul. Which is a really good thing for any parent of a sick child.

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Is newborn euthanasia an answer to parent pain?

By Louise Kinross

I was surprised to see this headline on a CBC The Current story yesterday: Newborns should have the right to die, ethicist says. Can newborns assert their rights?

The piece is framed as a discussion about euthanasia for newborns with severe, terminal illnesses.

One of the guests is Udo Schulklenk, a professor of philosophy and the Ontario Research Chair in Bioethics at Queen’s University.

He wrote a paper defending euthanasia of some infants with severe, terminal conditions.

During the CBC interview, the Dutch Groningen Protocol is referenced. The waters get muddy here as this protocol supports euthanasia not just for infants who will die imminently, but for those who have a poor prognosis and expected quality of life. For example, “a child with the most severe form of spina bifida will have an extremely poor quality of life, even after many operations,” write the authors of this paper describing the protocol in the New England Journal of Medicine.

Spina bifida is not a terminal condition (please see Deliberate termination of life of newborns with spina bifida, a critical reappraisal). 

The CBC interview doesn't make clear that the practice in the Netherlands includes euthanizing newborns with severe disabilities who are not terminally ill.

Udo argues that “once professionals have decided that further treatment would be futile and it’s a hopeless case, we ought to take into consideration whether or not the parents really want to sit by while treatment is withdrawn and while there is a prolonged period of time until eventually the newborn expires.”

Udo is referring to the process whereby nutrition and hydration provided by a nose or stomach tube is stopped and the child dies within days or weeks.

In 2013 the Royal Dutch Medical Association made a similar argument in a policy (click on English press release) that supports giving a lethal injection to newborns with serious birth defects whose tube feeding had been withdrawn, because watching them die “causes severe suffering for the parents.”

Typically, Dutch pediatric medical ethics and law in children’s treatment decisions are based on “the child’s best interests”—not parent interests.

At the time, I asked Dr. Franco Carnevale, a psychologist, nurse and ethicist at Montreal Children’s Hospital, if the argument to include “parent suffering” as a basis for a child's treatment decision is problematic.

“The 'child's best interests' was created to protect the voiceless vulnerable," Dr. Carnevale said. “Any time that the suffering or interests of others in a powerful position can trump the interests of the powerless in medicine, this is a direct breach of their rights. This would treat children as objects that are only worthy in terms of the pleasures they can bring, rather than humans with their own individual rights and interests that should be protected.”

Dr. Stephen Liben, interviewed on CBC yesterday, disagreed with Udo Schulklenk that relieving parent suffering is a rationale for newborn euthanasia. 

“What Udo is speaking to is the suffering of the parents who are watching their child die and it’s true, we can’t remove that suffering," said Dr. Liben, director of pediatric palliative care at Montreal Children's. "Children for the most part aren’t in pain, but the parents are in pain.

“The argument is being made that if you just end their child’s life now, their suffering will end sooner. I think that’s an argument that’s naïve... Is their suffering really over because their child has died? The suffering of the health-care professionals ends pretty quickly, we move on to the next patient...But for the families, how do we know how they feel years later, when a mother looks at a handicapped child smiling and laughing…and thinks ‘my goodness, how could I have asked the doctors, or allowed them, to end the life of my child?’”

When brain scans show severe brain damage in a newborn, Dr. Liben said, the decision is sometimes made to stop tube-feeding. But predicting how a newborn will be affected by brain injury is imprecise. “We're not really good at predicting what’s going to happen,” Dr. Liben said. “We have an idea of what the damage is, but we don’t really know for weeks and even years...to know how those kids will be.”

Dr. Liben was asked whether parents ever change their minds when they’ve chosen to withdraw artificial feeds from their infant. “I’ve seen that several times now,” he said, explaining that in these cases “we start the feeds again” and the children have lived, though "I don't know what's happened to them 20 years later.

“I’ve also seen parents change their idea from Oh, my poor child, this is so horrible” to returning two to three years later to say “The doctors have to do more. I love my child, he’s handicapped, but he...interacts with the world.”

Rather than talking about euthanasia, Dr. Liben said we need to “improve access to palliative care. “I’ve been doing this for 20 years and I shudder to think of what could happen” if euthanasia of newborns was practised.

“Given the way healthcare really works—the way it isn’t all studied doctors and nurses who are comfortable with these things without prejudices in their own minds left, right and centre. Things don’t happen rapidly and equally. The real world out there is there aren’t ethical committees that rapidly convene with intelligent people discussing things all day long.

“This is not what goes on across the country and if the law changes it applies to everybody and I think there’s way more harm than good. Looking at our healthcare system I just see that it would be abused. Is it just coincidental that it’s going to be a cheaper way out for government and for certain hospitals that are under pressure? I don’t have confidence enough in the human factor that we can manage this humanely.”

Take a listen to the CBC piece. Much food for thought.

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A lesson in love

Donna Kirk is the author of Finding Matthew: A Child with Brain Damage, A Young Man with Mental Illness, A Son and Brother with Extraordinary Spirit. Here she shares the challenges and joys in her family's remarkable journey to give Matthew (above left with his sister Kelley) a good life. Thank you Donna! Louise

By Donna Kirk

“Your son is a vegetable with a heartbeat.”

The head pediatrician at the hospital dismissed our first born child with a wave of his hand. My husband Ed and I were dumbfounded.

“Your child will never know you or progress beyond the infant stage. I recommend that you institutionalize him as soon as a bed becomes available. I’ll give the consent forms for the home to the neo-natal nurses.”

Our child’s name was Matthew. He had suffered oxygen loss at birth and could neither suck nor swallow. He was 10 days old and had been at the children’s hospital for nine days. As we listened to the doctor, I held our beautiful blond baby in my arms. His blue eyes looked up at me and he gripped my finger with his tiny hand. Matthew started to cry and so did we. The doctor looked at him, then turned and walked away. He hadn’t once called him by name.

We dubbed this pediatrician Doctor Doom and repeated his words to the nurses. One nurse handed us a box of tissues and told us she had 40 years’ experience with brain-damaged babies. In her opinion, Matthew would progress. The nurses became our first advocates. We ripped up the consent forms for the children’s home.

Two months later we brought Matthew home. He could swallow, suck and hold his head up and he weighed a robust eight pounds. He was eating, and loving, rice cereal.

Even though he cried day and night, we adored our baby. Car rides soothed him and Gordon Lightfoot music put him to sleep. I never forgot Doctor Doom’s prediction that Matthew could die at any time and kept him close to me during the day. At night, I checked him often. We were glad he was our only child and we could direct all our attention to his needs.

Matthew smiled when he was four months old and turned over both ways at five months. Our Mississauga pediatrician was our second strong advocate. “Keep doing what you’re doing Mom and Dad,” he said. “Matt’s making great progress.”

At 14 months, Matthew still wasn’t sitting. His left side was weak and he toppled over when we played sitting games with him. One day in a grocery line-up, he was propped up in the cart to keep him upright. A woman behind us watched him with great interest. She asked how old he was. 

“Fourteen months! He’s still not sitting?” she said. “Is he retarded?”

“Not as retarded as you are,” I said. Matt and I cried all the way home.

Ed and I decided our son needed muscle power and enrolled him in swimming classes in a program that offered instruction to children with disabilities. Matthew soon learned the route to his lessons and cried all the way there. I cried during the session because I thought they would drown him. Afterwards, he laughed all the way home and I laughed with him. He was so smart.

In 1972, at age two, Matt was the only student from the swim program chosen for a documentary to be broadcast on national television. Ed, my mother and I watched the filming.

The swimming instructor carried Matthew into the pool and released him under the water. Then she got out of the pool. My mother gasped and covered her face with her hands. When I urged her to watch, she peeked through her fingers. Matthew swam to the side, reached up and pulled himself out, then sat on the deck.

I called Doctor Doom’s office at the children’s hospital. We hadn’t seen him since Matt’s discharge. I told his secretary to make sure he watched “the vegetable” swimming on national television. The next day she called back. Would we please bring Matthew in?

Doctor Doom examined Matthew and declared him to be a healthy two-year old. He actually hugged him before handing him over to me. I was the proudest mother on the planet.

____________

Ed and I wanted more children. I hadn’t conceived since Matthew’s birth so we registered for adoption. Our daughter Kelley arrived shortly after Matt’s second birthday. He refused to look at her, clung to me and cried all the more. Ed and I were up every night with two children. Then, when Kelley was six weeks old, I became pregnant. Our second son, Joseph, was born 10 months later. We had three children under the age of three.

Kelley and Joseph grew and surpassed their brother. They walked, talked, learned to use the toilet and slept through the night. Although Matthew walked when he was seven, he didn’t speak, needed diapers and awoke for many hours every night. I lay awake and listened to his shouts.

Matthew had digestion problems since infancy. He regurgitated food constantly. Then a strange behaviour crept in when he was about five. He started throwing up at will, particularly when our attention was elsewhere. Nothing we tried altered this behaviour.

Ed and I realized we didn’t have the skills to help him. The demands of our complex life overwhelmed us. We were exhausted and our marriage was suffering. 

When Matthew was eight, he went to live at a residence for children and adults with developmental disabilities. Within weeks, he stopped vomiting and learned to use the toilet. Although delighted with his progress, we felt like failures. Strangers were able to help the child we loved.

Even though we visited Matthew often and he spent every Sunday with us, Ed and I never adjusted to his life in a house with 12 other children with disabilities. And, the staffing was inadequate in our opinion. But Matthew seemed happy. He attended local integrated schools where he was a popular student.

At age 18, he started having what staff at the home described as rage episodes. He shouted and twirled in a wide circle, his face red and his eyes wild. These sessions ended with the ingestion of inedible objects: pens, pencils, whole toothbrushes and small plastic things.

Multiple surgeries were required to remove these items. Matthew was diagnosed with Pica eating disorder and autism. The home’s psychiatrist prescribed medication that initially made him docile, then had no effect.

In 1993, Matthew swallowed a rubber glove which lodged in his intestine and burst his bowel. After life-saving surgery, he wore an ileostomy bag for months until his bowel was reconnected.

Ed and I were convinced our son would die at the home. We had never stopped searching for a better life for him, and doubled our efforts. A community agency offered a model of service called homeshare, and they agreed to support Matthew.

In September 1995, at age 25, Matthew moved into a single family home in Oakville. A woman named Marguerite became his new caregiver. There were no other people with disabilities in the home. Matt could roam around his house without encountering locked doors. But all small objects and medications were locked away.

Marguerite  broke Matthew’s habit of leaving his room each night. Although he still didn’t sleep well, now he was quiet. She worked with him to enhance the universal signs he used to communicate his needs. Within weeks, he was calmer and slept better. The anger episodes lessened. Pica attempts were few, then disappeared.

Matthew enjoyed the community each day with Beverley, his job coach. They visited the library, malls, restaurants and the local YMCA. He had a paying job delivering newspapers and a bank account where he kept his money. For the first time in 17 years, Ed and I knew our son had a meaningful life. Marguerite and Beverley supported Matthew for 15 years. 

____________

In 2009, Matthew’s agitation worsened, culminating in a rage incident that required police intervention. Matthew was admitted to a hospital psychiatric ward. A psychiatrist diagnosed him with agitated depression, and over the next year, different medications were prescribed. When they failed to alter his condition for a consistent length of time, we agreed to electric shock therapy.

But a cure for our son’s mental illness was not to be. The day before his first shock treatment, he aspirated food and became critically ill with pneumonia. His lungs, compromised by many bouts of pneumonia, could not mend.
   

After a four-month battle, brave Matthew died on July 6, 2010. My husband and I, Kelley and Joseph, Marguerite and Beverley, and his limitless friends and advocates were heartbroken.

____________

Matthew taught us the rewards of support, advocacy and stewardship. He taught us the joy and despair of unconditional love. He was the person who inspired me most.

It’s hard to adjust to life without him.

Royalties of Donna's book go to Brampton Caledon Community Living, which supported Matthew for 15 years. "My husband and I also give out an award each year called 'The Reese Matthew Kirk Above and Beyond Award,'" Donna writes. "This is a cash prize, plus an opportunity to attend a profession-related course of the winner’s choice. The candidates are employees of BCCL chosen by their peers, who went above and beyond their job description to support the people in their care. There have been three winners since Matthew’s death."

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Rain, BlogHer and child vs parent interests

Ben's favourite weather is rain. When he gets up in the morning he looks for clouds and dark sky out his window. He's been known to appeal to the heavens, clasping and shaking his hands, for rain. I'm not sure why he likes it so much. Perhaps because it's cool and refreshing: he tends to overheat in the sun and doesn't mind getting wet. Probably because it strikes him as funny: the skies opening up with water, as we humans scurry for cover, the potential for jumping in a large puddle, the tap tapping on our roof. 

During the flooding in Toronto last week he was in heaven.

On July 25 I'll be speaking on a panel at BlogHer '13 in Chicago. Let me know if you plan to be there! The session is called Special needs and caregiving: Changing policy and perception. I'm speaking with Julia Roberts (SupportforSpecialneeds.com), Christina Shaver (Hopeful Parents) and our moderator is Jen Reeves (Born Just Right. I have followed each of these bloggers and am thrilled to meet them in person.

Ben is off to his beloved Camp Kennebec in a week. Meanwhile, D'Arcy left for Nicarauga this morning to volunteer at Outreach360, a non-profit that runs centres where disadvantaged children can learn to read and write (in Spanish and English). Our dear friend Coco (who first taught us sign language and spends a week at Camp Kennebec with Ben each year) is the director of the program. D'Arcy has been fundraising for the group and yesterday picked up some donated school supplies from Staples. For months he's been sitting on the porch listening to Spanish tapes and repeating phrases. Sometimes when the kids phone he'll speak in Spanish, until they hang up! Finally, he'll have someone to understand him.

A Canadian ethicist told me about a new policy from the Royal Dutch Medical Association (click on the English press release) that supports giving a lethal injection to disabled newborns—whose artificial feeds have been withdrawn—because watching them die "causes severe suffering for the parents."  

Typically Dutch pediatric medical ethics and law in children's treatment decisions are based on "the child's best interests"—not parent interests.

The Groningen Protocol supports euthanizing Dutch newborns with a "hopeless prognosis" and "unbearable suffering." For example, "a child with the most serious form of spina bifida will have an extremely poor quality of life, even after many operations."  

I asked Dr. Franco Carnevale, a psychologist, nurse and ethicist at Montreal Children's Hospital, if the new move to include "parent suffering" as a basis for a child's treatment decision was problematic.

"The 'child's best interests' was created to protect the voiceless vulnerable," Dr. Carnevale said. "Any time that the suffering or interests of others in a powerful position can trump the interests of the powerless in medicine, this is a direct breach of their rights. This would treat children as objects that are only worthy in terms of the pleasures they can bring, rather than humans with their own individual rights and interests that should be protected."

Meanwhile, a memorial wall is being built in Berlin to honour the 300,000 children and adults who were killed during Hitler's euthanasia program for those with physical and intellectual disabilities.

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Why blame Mom?

Historically it's been mothers who are blamed when children are born with disabilities. In earlier times we were thought to have sinned, while today the belief that women can prevent birth defects, by what we do or don't do during pregnancy, is rampant. And so is its unfortunate corollary: that women who give birth to a child with a disability caused it.

Public health messages that suggest mothers can prevent most defects by taking care of themselves during pregnancy abound.

According to the U.S Department of Health and Human Services website, a healthy baby is the outcome of these five steps:

Five Ways To Have A Healthy Pregnancy and Baby

1. See a doctor or other health-care provider from the start of your pregnancy.

2. Don't drink alcohol, smoke cigarettes or take drugs.

3. Eat healthy foods, including fruits, vegetables, low-fat milk, eggs, cheese and grains.

4. Take good care of your health and exercise sensibly.

5. Have your baby checked by a doctor or health-care provider right after birth and throughout childhood.

More current information (including the importance of folic acid and risks associated with obesity and diabetes) is listed at the Centers for Disease Prevention and Control. 

Yet we know from the March of Dimes that the cause of most birth defects—up to 70 per cent—is unknown. It follows that in most cases a woman can't control whether her baby is born with or without a disability (unless she aborts a child diagnosed prenatally). I bet you most mothers of children with disabilities followed the five tips above to the letter. 

So why are we led to believe our baby's health rests solely in our hands?

Consider this Healthy Babies Are Worth The Wait t-shirt I found as part of the Prematurity Campaign on the March of Dimes website.

What is the meaning of this, I thought? Women don't choose to have premature babies because they're impatient. Most preterm labour, in fact, can't be prevented. "Our analysis shows that the current potential for preterm birth prevention is shockingly small," said Dr. Joy Lawn of Save the Children, who led the first multi-country study looking at the causes of premature births and how to reduce them, published in The Lancet last November. So why suggest that women can control premature births?

Apparently the Healthy Babies Are Worth The Wait initiative targets women who consider scheduling a C-section before 39 weeks. "If possible, it's best to stay pregnant for at least 39 weeks," says the article.

This campaign won't touch the rate of premature births, which declined in only three countries of 65 from 1990 to 2010 according to The Lancet study. That's because asking your obstetrician for an early C-section isn't a major contributing factor.

But how will a mom of a preemie with disabilities feel when she reads that t-shirt message? What if a sibling of the child with disability reads the shirt and asks Mom why she didn't wait?

Yesterday I read about a new March of Dimes book called Healthy Mom, Healthy Baby in this New York Times' article: Too Many Pills in Pregnancy.

According to the Amazon description, Healthy Mom, Healthy Baby empowers "mothers-to-be... with more information and positive steps than have ever been available before to ensure both a healthy pregnancy and a healthy, happy newborn."

What?

If most causes of birth defects are unknown, "positive steps" taken in pregnancy can't guarantee a healthy baby.

The book is mentioned in an article in which the American Food and Drug Association estimates that at least 10 percent of birth defects result from medications taken during pregnancy. According to the article, a recent study shows inaccuracies in online information about which drugs are safe, which means women who choose the Internet over a doctor's consult may receive faulty advice.

That's critical information for women, and I can't imagine anyone arguing that we shouldn't carefully weigh the risks and benefits of medication use with informed doctors.

But don't suggest that healthy moms who do all the right things during pregnancy have healthy babies!

Titles like Healthy Mom, Healthy Baby feed this magical thinking. And they reinforce the popular fallacy that mothers of disabled children did something wrong to cause their child's condition.

In a recent piece called Pregnancy and blame on Conversations, an Australian news site, author Kathryn Knight writes about how simplistic public health messages about birth-defect prevention diffuse into the culture. We all know parents who've been been the recipient—at school or on the playground—of judgemental questions like: What went wrong? Didn't you get the test? Why didn't you terminate?

And that line of questioning isn't limited to an uninformed public.

I have a son with a rare genetic condition. The way a researcher described it, when my chromosome 8—let's call it a green ribbon—exchanged parts with my husband's chromosome 8, a red ribbon, to produce a striped red-and-green ribbon, a minute piece was left out. That random error at conception caused his disabilities.

Yet to this day (he's 18) I'm asked by health providers for a detailed pregnancy and delivery history. "But the genetic condition occurred at conception," I will implore, as the 20 questions about my pregnancy are trotted out. "It had ALREADY happened!"

A blog in Three To Be's Parent Advocacy Link yesterday had a similar theme: 

"When Maclain was born, I blamed myself very heavily for a long time," writes Brenda Ferland Agnew. "It was my fault that one of my twins had died. I should have known sooner that something was wrong. I should have gotten to the hospital sooner. If I had done things differently both of my babies would have survived, and Maclain wouldn’t have been born so early. I could have prevented his brain damage if I had done something more. I carried this with me everywhere I went, with every move I made. It ate away at me, and kept me awake at night...

"A year and a half after his birth, we received confirmation that Maclain’s brain damage was caused by a condition known as Kernicterus. He was not treated for jaundice, and this was what caused his cerebral palsy and his hearing loss. We had suspected it for a few months, and after a visit to our neurologist, we got a letter that ruled out his brain damage having been a result of any intrauterine insults, or because of the Twin to Twin Transfusion...

"I was so angry that I had been made to feel by all the medical professionals, that my son had disabilites because of something I had done wrong."

We have less control over a myriad of things that can happen to a fetus than books like Healthy Mom, Healthy Baby—or Five Ways To Have a Healthy Baby tip sheets—would have us believe.

Let's speak the truth about how much we don't know about the causes of childhood disability and, more importantly, how to prevent it. Let's tell the truth about how Healthy Mom can just as easily produce Unhealthy Baby, or Healthy Baby with a Disability (because disability is not necessarily synonymous with poor health!).

Every mom wants what's best for her baby. In most cases when congenital problems are found, it's not because of something we "did."

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Answering your question on withdrawal of fluids in newborn

On Friday a parent posted this question on the BLOOM blog:

"Is it routine to withdraw fluids and nutrition from infants in the NICU? That is what we were offered for our son in hospital after we removed the ventilator and put a DNR on his chart and waited for him to die. He didn't die. He didn't need a g-tube, he was able to breastfeed and get enough nutrition for himself yet it was offered to us to just stop feeding him orally, give him morphine for the pain and let him go. Is this sort of thing common?"

I contacted Dr. Jonathan Hellmann, who is clinical director of the neonatology unit at the Hospital for Sick Children in Toronto for clarity on how to answer this question.

Dr. Hellmann authored a paper earlier this year about parent perspectives on withdrawing intravenous fluids in newborns with severe neurological injury or disease where the decision to stop life-sustaining medical treatment such as ventilation is made (Withdrawal of artificial nutrition and hydration in the Neonatal Intensive Care Unit: parental perspectives). None of the newborns in the study could safely be fed orally.

According to the study, in addition to requiring the full support of the parents and the senior medical staff and team, the practice of withdrawing artificial nutrition and hydration requires "the clear demonstration of the inability of an infant to safely tolerate oral feeds (oral feeding was regarded as routine care even in those in whom it took many hours to achieve a satisfactory intake.)"

Given this criteria, I asked Dr. Hellmann whether withholding milk from a baby who is able to breastfeed -- as reported above by the parent on BLOOM -- fell outside the practice of withdrawal of artificial fluids and nutrition.

Dr. Jonathan Hellmann: Your interpretation is correct. Only if the feeding is regarded as medical treatment i.e. requiring tubes, IVs, lines etc. is it ever our practice to possibly raise the issue with parents of a profoundly affected infant. If the child is able to tolerate feeding it is absolutely not acceptable to consider withdrawal of hydration and nutrition. I am extremely concerned that individuals might interpret our findings without every effort being made to feed even small sips, and only when it is unsafe to potentially raise the issue. It is certainly not common practice here and requires very careful consideration in every case.

I hope the parent who posed the question above sees this blog and lets us know if she has more questions.

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Hospital infections kill, are preventable

Barb Farlow sent me this video called Gabby. It's about a couple who lost their daughter to a preventable infection she picked up in a newborn intensive care unit (NICU). The video was produced by the Perinatal Quality Collaborative of North Carolina. Barb is on the Stop Infections Now Collaborative of the Canadian Patient Safety Institute. Watch the video.

The images above are from a piece in the New England Journal of Medicine.

The top one is the handprint of a health-care worker after examining a patient's stomach. The pink colonies are methicillin-resistant Staphylococcus aureus (MRSA), a virulent type of bacteria that doesn't respond to standard antibiotics. The bottom image is the worker's hand after washing.

MRSA bacteria can enter the body through a surgical wound, IV, catheter or breathing tube. MRSA infections in the bloodstream, heart, lungs and urine can be deadly. Those pretty-pink handprints can kill.

One in 10 hospital patients will develop a common or antibiotic-resistant infection after being admitted. In a small Canadian study of hospitalized children, 9 per cent developed an infection while in hospital.

When an IV, catheter or breathing tube isn't inserted and cared for properly, bacteria that normally resides on the skin without problems can gain entry and cause infection. You may also pick up a superbug like MRSA or C. difficile from the environment -- by touching a dirty bed rail, light switch or a person who hasn't washed their hands.

Health-care associated infections (HAI), as they're now called, are the fourth leading cause of death in Canada.  Between 9,000 and 12,000 Canadians die each year as a result, says Dr. Michael Gardam, medical director of infection prevention and control at Toronto's University Health Network. I spoke to Dr. Gardam to learn more.

BLOOM: How many infections acquired in hospital are preventable?

Dr. Michael Gardam: Ten years ago we would have said at least a third of them, but now we would say the vast majority. We used to consider many of these infections as the cost of doing business but now realize they can be dramatically reduced.

BLOOM: Is lack of handwashing among professionals the main cause?

Dr. Michael Gardam: Handwashing has certainly gotten a lot of attention. The World Health Organization and others say poor hand hygiene is responsible for at least 50 per cent of these infections. But you can also catch an infection from the environment. For example, a health-care worker's hands may be pristine but a person could pick up C. difficile from the bed rails. Or a patient can develop C. difficile in a room where a previous patient had it, if the room isn't cleaned properly.

A lot of hospital infections happen because we're doing something to you -- inserting a catheter or IV. Did the worker properly wash your skin? Are they checking the IV site daily to see if it's red or sore, and are they discontinuing the IV if you don't need it? If the IV isn't cared for properly you can develop an infection from your own skin flora. That can cause a skin infection or get into your blood and cause life-threatening sepsis.

Surgery is an area that's well-studied on how to prevent infections. There are multiple things you can do to decrease the infection rate, but the system is still fairly slow to adopt all of them.

There are times when we can do everything perfectly and the person still might get an infection. But many times we are not doing things perfectly. With most patients who get an infection, we can identify things that weren't done properly.

BLOOM: How big a problem are these infections for preemies or for children with disabilities or chronic conditions who may be hospitalized frequently?

Dr. Michael Gardam: Infection is one of the main causes of death in preemies and there are multiple reports of child deaths from infection acquired in the NICU. They've linked these infections to handwashing and to the environment as well. For example, nurses wearing artificial nails have been linked to deadly outbreaks: fungal infections can get under the nail and then be passed on to these remarkably susceptible children. Their skin isn't normal, they have multiple IVs and are often intubated and once they're colonized with organisms it's easy for those organisms to walk right in.

Children with disabilities would be at the same risk as other children who are having IVs or catheters or breathing tubes put in. What increases the risk are pre-existing conditions that affect the immune system -- like diabetes. Of course the more you're in the hospital, the more likely you are to catch something.

BLOOM: What kind of disabilities can be caused by serious infections?

Dr. Michael Gardam: Brain infections can lead to permanent brain damage and lung infections can cause chronic lung problems.

BLOOM: Would a family be informed that the infection their child had was preventable?

Dr. Michael Gardam: Usually not. Not because the staff are lying, but because they see these infections as a cost of doing business, and it's not just health-care workers, it's all of society. Let's say a loved one is in the ICU and the doctor comes out and tells the family "We gave him the wrong dose of this drug and he went into cardiac arrest and died." I'm sure the family would think of this as a mistake, an error, and might talk about suing. But if the same doctor comes out and says "Your loved one caught an infection in the ICU and we gave him antitbiotics but they weren't strong enough and he died," people accept that kind of news. Infections are still seen as things that happen.

BLOOM: But you've just said that most are preventable?

Dr. Michael Gardam: It's a brand new world for us. We're waking up and realizing that these things are preventable. Twelve years ago when I trained in infection, doctors were saying there was no way of ever preventing central-line infections, they were simply the cost of doing business. And now we know they can be prevented. We'll never get to zero but we can bring them down remarkably.

BLOOM: So why would a health-care worker not do everything possible to eliminate them?

Dr. Michael Gardam: Let's say I'm a surgeon and my infection rate is 2 per cent. If I do your surgery I can say there's a 98 per cent chance that you'll be fine. If I do all of these infection practices I may be able to say there's a 99 per cent chance you'll be fine. Some surgeons are looking at probability and stats rather than individuals. They're not thinking about the one patient who gets an infection for whom it's 100 per cent. The surgeon will be upset if one of his patients gets an infection, but he won't put two and two together. We're changing, but at a snail's pace.

BLOOM: What would you recommend parents of preemies or children with disabilities who are hospitalized do to try to prevent their child from getting an infection?

Dr. Michael Gardam: Well, when I was hospitalized in my own hospital a year ago, I washed my hands multiple times a day with alcohol gel, which is generally better than soap. I did this because many of the things you can contract in hospital you pick up because you're touching stuff. So as a parent, encourage your kid to clean their hands frequently and clean your own hands. I also used a container of disinfectant wipes to clean my room. I would wipe down my IV pole and the bed rails and the reason I did that is because no one else was doing it. Most hospitals have these wipes available. Clearly some people might take exception to a family cleaning up the room, but that's what I did.

You can let the health-care worker know that you understand most hospital infections can be prevented and you'd like to work with them to protect your child. The trick is to get the point across without directly challenging the health-care worker.

You can ask health-care workers to clean their hands, but the power differential there is absolutely unequal and to some extent you're at their mercy. When I'm rounding with residents, I tell them to always wash their hands in front of the patient, even if they've just washed their hands.

BLOOM: Do you get pushback on that?

Dr. Michael Gardam: Yes, I do. But I tell the residents that it doesn't matter whether you just did it, the patient cares about seeing it done and it's not about you. A woman was telling me about her son who was hospitalized for Crohn's disease and the IV team came in to start the IV and she knew they hadn't cleaned their hands. And she was struggling over how she could bring it up in a way that they wouldn't be offended and potentially not start her son's IV. What do you do? You don't want to be perceived as a difficult person. In the end you don't say anything because you're afraid.

BLOOM: I'm having a hard time wrapping my head around the idea that doctors and nurses know what to do to prevent these infections and they're not doing them.

Dr. Michael Gardam: There are major cultural impediments. If you ask health-care workers why they don't follow these known practices you'll hear "I don't have time" or "I'm too busy" or "I wasn't educated properly" or "Frankly, no one else is doing it that way." But it doesn't take long to do these things. There's a disconnect between their actions and what happens to their patients.

When a patient has been in hospital for days and gets an infection, you can't really pinpoint one person who's responsible. It's systemic. Multiple people occasionally don't follow all of the practices, which leads to multiple circumstances when a person could develop an infection. So while the health-care worker feels sad that a person got sick or may have even died, they don't know it was a result of their action.

BLOOM: What are other barriers to getting compliance with infection control?

Dr. Michael Gardam: A prevalent behaviour in doctors in general is that they have their one piece of the puzzle -- like surgery -- and others can deal with the rest. So as a doctor, I kind of understand how a surgeon would say: "I'm going to do the best operation possible," but not look at it holistically, in terms of feeling responsible for the entire care the patient receives in the hospital before and afterwards.

For example, if the room isn't cleaned properly the patient may become ill but a surgeon may not see that as part of the patient's care. There's a sense of "The operation went fine, our job is done." One thing we're doing now to close the loop at UHN is to treat all serious infections as adverse events, where an incident report is filled out and the people responsible have to report back on what things were not in place to prevent that infection.

BLOOM: Why doesn't a teaching hospital commit to a policy of zero tolerance for staff who don't follow all prevention practices?

Dr. Michael Gardam: Doctors wield enormous power and are typically not hospital employees. You might be able to do that to a hospital employee, but not a doctor who works "at" the hospital but not "for" the hospital. Let's says there's a surgeon at a teaching hospital who's a brilliant researcher and she's getting the hospital's name out there. Are you going to take away the hospital privileges of someone like that because she doesn't buy the corporate values about infection prevention? Not following these practices shouldn't be tolerated, but it's difficult for hospitals (to enforce). The tide is starting to turn, however, and more and more physicians are getting called on such behaviours.

BLOOM: I'm astounded that people wouldn't willingly follow these practices?

Dr. Michael Gardam: People get stuck in certain types of behaviours. They may do things that they know aren't good, but education may not motivate them to stop.

One doctor who's become a 'born-again' patient safety guy told me he resisted the whole central line practice bundle. "I refused to do it because I felt my patients weren't getting infected," he said. "Then they started sending out infection rates by the doctor's name and I was a negative outlier. Everyone else was doing it and I felt like an idiot." In this case no amount of book evidence had an effect because the surgeon needed real-life evidence in front of his face. He knew he should be putting in a line in a different way but it didn't seem relevant to him.

BLOOM: What can we do to change the culture?

Dr. Michael Gardam: We're not perfect, but in the last six years we've seen significant organizational change at UHN. The way we've done it is to engage frontline staff and have them own quality improvement initiatives. We don't lead these initiatives ourselves. Hand hygiene improved when infection control got out of the hand hygiene business.

We tell stories of patients and we ask staff to tell their own stories about patient infections. Sometimes we ask a group of staff to design a system to do the opposite of what we want it to do: How would you ensure that every child on this unit got a urinary tract infection and it would be severe? List all the ways that would happen. Are there any things on the list that you're currently doing? Is there something you'd like to see change? Usually there are a few people who want to make a change and they'll lead these changes.

BLOOM: I'm still astounded that you need to be a 'psychologist' to get these changes made when we know they can save lives.

Dr. Michael Gardam: Health-care workers are people and they have the same issues as everyone else. A lot of this is deeply-ingrained behaviour. To help us along, we need the public to say "We're not taking this anymore" and it's a tricky line to walk. If you push too hard health-care workers may shut you out and feel offended. By the same token, we need to hear the message.

It's not about the health-care provider, it's about you, the patient.

If you'd like to ask Dr. Gardam a question about infection prevention, post it here and we'll do a follow-up blog with answers.

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I say 'gobbledygook!'

I know nothing about philosophy in the academic sense.

And, after reading this paper published in the Journal of Medical Ethics, I have no interest in knowing anything about it.

In After-birth abortion: Why should the baby live? a philosopher and an ethicist argue that killing newborns – before they have neurological self-awareness – is ethical for children with disabilities, because it's assumed they would be an unbearable burden to their families and society. They also argue that infanticide is ethical for a healthy baby with no disabilities, if that baby might compromise the psychological, social or economic wellbeing of parents, siblings and society.

In a nutshell, Alberto Giubilini and Francesca Minerva argue that if a newborn is disabled, not wanted by his or her mother or too expensive, it's ethical for doctors to kill the baby.

In their article, the academics attribute the right to life only to individuals who can appreciate their existence and have ‘aims’ or dreams for the future, so that depriving the person of that life would be experienced as a loss. If individuals can’t value their life and plan for the future, because their brains are in the newborn state, or because they have a disability, the philosophers categorize them as non-persons who would not be harmed if killed.

“Merely being human is not in itself a reason for ascribing someone a right to life,” is how they so eloquently put it.

The philosopher/ethicist duo say that killing newborns who have severe mental and/or physical disabilities is ethical if the parents would have aborted the child in advance – if only they had the knowledge.

An example given is Treacher Collins syndrome, a rare genetic condition that Giubilini and Minerva describe as causing ‘facial deformity’ and physiological ‘failures,’ including potentially life-threatening respiratory problems.

Hmmmmmm. I thought. I remembered the name Treacher Collins because when my son was a toddler we visited an ear-nose-and-throat specialist at a world-renowned children's hospital who mentioned the syndrome in passing, noting that some of the facial differences were similar to those seen in my son. In fact, when telling us about Treacher Collins, the ENT said that Sylvester Stallone had the condition, and that while people with Treacher Collins had facial differences that required reconstructive surgery, they were intact intellectually and led full lives.

That doesn't seem to line up with the journal article's description of 'physiological failures' and life-threatening respiratory problems.

I did a quick search online and came across this blog by a young woman with Treacher Collins who is a physician in internal medicine, pediatrics and sleep medicine. She is also married and from the looks of the blog, loves her life.

Guibilini and Minerva note that people with Treacher Collins have typical intelligence so they would be aware of how ‘different’ they are and of all of their problems (seeming to imply that this would make death a better option).

They also tell us that 'many parents' would choose to have an abortion if they found out their child had Treacher Collins prenatally (not sure how they produce evidence of this claim, since it is not a standard syndrome tested for).

It seems to me that our philosopher and ethicist were looking for a syndrome that's not part of the regular prenatal testing battery to give an example of a situation in which parents don't have the option of aborting because they don't know of the diagnosis. Unfortunately, they didn't take much time to actually research Treacher Collins or speak to people living with it.

They lament the fact that in 18 registeries in Europe between 2005 and 2009, 'only' 64 per cent of ‘Down-syndrome cases’ (remember, we’re not talking people here), were detected prenatally, and that 1,700 babies with Down syndrome were born to parents who learned of the diagnosis at birth. For some reason, the philosophers don’t make the leap of understanding to consider that perhaps the parents of those 1,700 babies chose not to have prenatal testing because they decided to carry a child to term whether the child had Down syndrome or not.

They end this section with this bizarre statement: “Once these children are born, there is no choice for the parents but to keep the child, which sometimes is exactly what they would not have done if the disease had been diagnosed before birth.”

In this statement I can hear my 13-year-old son whining "It's not fair," and myself responding, "There are lots of things in life that aren't fair. But that's life."

Hello! Who said control over our circumstances is attainable in this life? Coming to grips with our vulnerability is part of the growing-up process which seems to have been lost on these academics. How would these philosophers ‘solve’ the problem of our mortality? Because I am sure there are many people who might not choose to die either.

But back to the article.

Giubilini and Minerva note that euthanasia in infants has been proposed by philosophers for children with severe abnormalities who meet two conditions: their lives are not worth living (they don’t define this – although we can assume from earlier comments that they equate an unworthy life with intellectual OR physical impairment that limits a person’s ability to envision or achieve their aims or dreams). The other condition is that they are experiencing unbearable suffering.

They tell us it is reasonable to predict that living with a severe condition is against the best interest of the newborn. They don’t say on what they base this prediction, but it’s interesting to note that while economists analyze quality-of-life years using models that assume low quality of life for people with chronic illness and disability, large-scale studies of self-reported satisfaction in people with disabilities paint a different picture.

Dr. Chris Feudtner, a pediatrician and director of the department of medical ethics at the Children's Hospital of Philadelphia went to great pains to describe this in a talk he gave at the Montreal Children's Hospital last year.

But our philosophers were not listening.

The article is full of contradictions -- on the one hand mentioning studies that find people with severe disabilities are happy, on the other, creating an image of the same people suffering unbearably.

Which one is it?

 They argue that the interests of ‘real people’ – who they define as parents, siblings and society at large – come before those of the newborn, who is a non-person, whether disabled or not. In fact, they suggest the term ‘after-birth abortion’ be used, rather than infanticide, because they compare the newborn to a fetus rather than a child.

“Actual people’s wellbeing could be threatened by the new (even if healthy) child requiring energy, money and care which the family might happen to be in short supply of,” they write.

And: “If a disease has not been detected during the pregnancy, if something went wrong during the delivery, or if economical, social or psychological circumstances change such that taking care of the offspring becomes an unbearable burden on someone, then people should be given the choice of not being forced to do something they can’t afford.” Since they believe the newborn does not yet exist as a person, they perceive the newborn as expendable.

Can't you hear that voice of my 13-year-old: "Why do I have to? It's not fair!"

Guibilini and Minerva even go so far as to say that a healthy newborn could ethically be killed rather than being placed for adoption because the idea of adoption might be more psychologically distressing to the mother.

The killing of disabled newborns would take place within a few days of the birth, they say, which they believe is enough time for the doctors to detect abnormalities. Further, in the case where a child is healthy, the killing can take place outside of any time threshhold as long as neurological assessments determine the child is not self-aware.

Minerva is quoted in the Daily Mail as saying: "This is not a proposal for law. This is pure academic discussion.”

The picture that runs with the piece shows a young woman (20-something?) who was formerly at Oxford and is now at the University of Melbourne.

Perhaps Minerva would like to consider the psychological 'harm' done to the wellbeing of 'real' families like ours who have to read her drivel? We can only hope that in the next few years she gains some life experience, is humbled and comes to her senses.

The editors of the Journal of Medical Ethics defended publishing the article in the name of intellectual freedom. I'm more interested in intellectual rigour.

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A fate worse than death?

I attended a fascinating conference Wednesday at the Montreal Children's Hospital on ethics related to the care of children with disabilities.

One of the themes was cultural devaluing of children with disabilities – and how it can play out in decision-making about care, including whether to withdraw care from premature newborns with significant disability.

A neonatologist in the audience made the following comment.

“There is a feeling among my colleagues – an unspoken and probably unconscious bias – between physical and mental disability. Sometimes neonatologists think if you're not perfect mentally, you're better off dead. But when it comes to physical disability, they will go a long way with interventions.”

Neonatalogists care for newborns with complex, life-threatening problems related to prematurity, illness or congenital disability.

I think the stigma that intellectual disability is worse than physical disability is widespread, even within the disability community itself.

We can't know if what the doctor said about the pervasiveness of this attitude in neonatology is true. Perhaps she is ascribing her own bias to others. But it would certainly be shocking if specialists trained in the care of disabled newborns held such views.

According to the American Academy of Pediatrics, neonatologists go to medical school for four years, then train as pediatrics residents for three years, then train for three more years in newborn intensive care. That’s a decade of learning.

Is it reasonable to expect that in this 10-year span the attitude that intellectual disability is worse than death would be challenged?

Neonatologists, as part of their training, should be required to have extensive interaction with families of children with intellectual and other disabilities, so they have a firsthand understanding of what life with these conditions is like. I hope we hear from a neonatologist about what kind of exposure to families of children with disabilities is included in their training.

At the Montreal conference we also heard about the Disability Paradox – that people with serious disabilities rate their lives as good or excellent while able-bodied people, particularly medical professionals, rate quality of life in people with disabilities as poor.

And we heard about research that shows that the way a health problem is framed influences the decision a family makes about treatment choices. How clinicians order information, the words they choose and even the tone of their voice can have a significant impact on how parents of children make medical decisions.

If a neonatologist were to believe that intellectual disability is a fate worse than death, how could that bias not seep through when conveying this diagnosis to families? Wouldn't that belief run contrary to communicating that a child with intellectual disability has value?

When a life hangs in the balance, I believe parents should receive the most complete information about intellectual disability, including the perspectives of families whose children live with it.

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