Grief: an unlikely friend

This post is dedicated to Erika at The Flight of our Hummingbird.

When my son with disabilities was younger, I often felt a failure because I still grieved for him. Why did I feel sad, mad, guilty and anxious – when I adored my son and he brought me such delight?

Here are some of the reasons.

I couldn’t give him a clean slate in life. When I shared the joyous news of his arrival, I had to mention his suspected genetic condition, and worry about how people would react. I felt guilty that I had done something to cause his condition. I couldn’t fathom why this had happened to my son, to me, to my husband. I was terrorized when Ben choked on solids – leading to frantic 911 calls and ambulances – yet was told (incorrectly) they were isolated incidents. From age one to four he had severe, recurrent ear infections that couldn’t be treated with eight sets of tubes or antibiotics, and caused excruciating pain. He lost words, never to speak them again. The list of diagnoses he collected over the years felt like cruel blows: failure to thrive, uncoordinated swallow, dwarfism, submucous cleft palate, inability to speak, hearing loss that wasn’t properly diagnosed till age five – despite repeated hearing tests! – fine-motor problems that meant he would never write, early-onset arthritis and pain, bony growths that would have to be removed surgically and mental retardation. Whenever we were adjusting to one diagnosis, another was walloped on.

Physical and speech therapy were gruelling and didn’t result in the gains we had hoped. Ben was not the poster child for early intervention. If success was measured by his ability to reach rehab goals, I had never been so unsuccessful in my life.

Surgeries that were explained as simple, routine, didn’t go as planned (an epidural that didn’t ‘work,’ a testicle lost to infection, plastic surgery to reconstruct his ears that so failed that the resident who saw us post-surgery asked: ‘So you’re here about having his ears fixed?’).

Heartless professionals, like the surgeon who walked into a room full of residents being charmed by a babbling Ben and demanded angrily: “What is WRONG with his head?” Or the perky pediatric dentist who asked me in a pitiful voice, as I held my precious 18-month old son, in whom I was so proud: “Will he E-V-E-R walk?” “Is he short for his age?” “Is he mentally retarded? Oh, I guess you wouldn’t know that yet anyway!”

By the time Ben was a preschooler I felt I should be “over” my painful feelings and was petrified that I might never come to a place of acceptance. I sensed friends who hadn’t experienced disability in their children were tired of hearing me express my angst. Physicians said things like: “You need to face reality” – as if I could choose acceptance the way one chooses a shirt to wear that day.

I recently read an article by psychologist Ken Moses that helped me understand that the painful feelings I experienced served a purpose, and I now see them as a natural and healthy part of parenting a child with disabilities.

Dr. Moses explains how different aspects of grief – denial, anxiety, fear, guilt, depression and anger – allow us to cope in the early days, mobilize resources and support, and over the long-term to self-reflect, grapple with and redefine our values, priorities and beliefs, and change and grow as people.

I wanted to interview Dr. Moses, but couldn't locate him. In addition to being a psychologist, when his article was published in 1987 he had a child with disabilities and worked with groups of mothers of children with special needs.

Here are some relevant points I pulled.

In working with mothers he notes: “It became evident that these people were manifesting a grieving process…The impairment, not the child, irreversibly spoils a parents’ fundamental, heartfelt yearning. Disability shatters the dreams, fantasies, illusions and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Recovering from such a loss depends on one’s ability to separate from the lost dream, and to generate new, more attainable dreams…Each feeling state, no matter how negative, serves a specific and helpful function.”

Dr. Moses says grief emotions provide the context for self-examination that can lead to positive change. There’s no recipe for the order in which we experience them, he says, and no “right” way to grieve.

He argues that “the concept of acceptance” as an end-product for parents “is totally unfounded. In almost 20 years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgement. Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it.”

Here are some of the positive uses Dr. Moses sites for the different emotional states of grieving:

Denial: “Denial buys the time needed to blunt the initial impact of the shattered dream, to discover the inner strengths needed to confront what has really happened, and to find the people and resources needed to deal with a crisis for which one could not be prepared.”

Anxiety: “To deal with having an impaired child, parents go through dramatic changes that affect their attitudes, priorities, values and beliefs, as well as altering day-to-day routines. Such changes require a great deal of energy. Anxiety mobilizes the energy needed to make these changes...Anxiety is the inner source of the need to act.

Fear: Fear is a warning that alarms the person to the seriousness of the internal changes that are demanded…The parents experience the terror of knowing that they will be required to change on a fundamental level, against their will, with full understanding that the process of internal change is very difficult. Significant losses produce a profound sense of abandonment and vulnerability…Fear is the medium that encourages the struggle to reattach, to love again in the face of loss.”

Guilt: “Generally, parents of impaired children express guilt in one of three ways. One way is by telling a story that explains how they are responsible for their child’s handicap. The current emphasis on the prevention of birth defects has brought many parents to feel that they caused their child’s impairment. The issue is not the logic, but the feeling of guilt. Another way that guilt is manifested is in the conviction that the child’s impairment is punishment for a past inappropriate thought, feeling or action. Lastly, guilt can be expressed through the parent’s belief that good things happen to good people…Because parents have an impaired child, they must be bad people...How can such painful explanations of tragedy be useful?...Simply by being explanations. Guilt “explains” the unexplainable. When people confront a loss, the beliefs they held regarding cause and effect, right and wrong, and their impact upon life are deeply shaken. Basically the guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything! Guilt, in this sense, helps one to redefine the issue of cause and responsibility in the light of loss.”

Depression: “Depression is part of normal, necessary and growth-ful grieving. As we mature, we develop and modify our definitions of the following words: competence, capability, value and potency. They are words of profound personal significance. They are the criteria that people use to decide if they are okay or not. When parents are confronted with an impaired child, whatever definitions they held for competency, capability, value and potency usually no longer apply. How does a mother feel competent when she has a retarded daughter? She can’t use the measures of her peers, like having a daughter graduate from college…What is the worth of a father who cannot 'fix' what is broken in his impaired son? A parent feels unable to act effectively (helpless), unable to imagine that things will ever get better (hopeless) and unable to believe that their lives are touched by good luck (hapless). Depression is the medium that helps parents come to new definitions of what it takes to be competent, capable, valuable and strong people, even though their child has impairments they cannot cure.”

Anger: “Parents feel anger at the harm done to their child and the shattering of their dreams…One’s internal sense of justice is severely challenged. As events occur that violate one’s sense of justice, the outrage must be expressed. Those expressions help to redefine one’s concepts of fairness and justice…and develop new beliefs...that make the world a tolerable place to live, even though terrible losses can occur.”

Dr. Moses says that expressing grief emotions deeply and fully with other parents and professionals enables parents to develop new values, priorities and beliefs that promote growth and resilience.

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For the love of Annie

By Louise Kinross

When Barb Farlow learned the baby she was carrying had Trisomy 13, her decision to continue the pregnancy "was immediate and innate, and in complete contrast to what I thought I might do," says the Toronto mother and engineer. She was told the syndrome was lethal, but through online support groups met families whose children were living with Trisomy 13. "It was very important to us that she not suffer unnecessarily, but we wanted to consider any surgical treatments and make 'best-interest' decisions for her, like any parent."

Barb's daughter Annie (above) was born without the brain and heart defects common in Trisomy 13, but died at 80 days in 2005 after being rushed to a children's hospital in respiratory distress. Following her death, Barb acquired Annie's medical records and learned a "not for intubation" order had been written without consent. “This discovery was like the first domino in a long line of questionable events that left us unclear as to whether our daughter’s death was preventable.” Determined to change what she believes is systemic discrimination against treating children with certain genetic conditions, Barb shares Annie’s story at health-care conferences and ethics talks, with medical and law students, in medical journals and through her work with Patients for Patient Safety Canada.

Me: When did you learn Annie had Trisomy 13?

Barb Farlow: After the 22-week ultrasound, the geneticist said "this is Trisomy 13, 18, or something equally lethal." We were told she would likely die before birth or in the delivery room. Initially, the research we did suggested these babies were ‘incompatible with life.’ We were confused because it seemed that many of the anomalies they had could be fixed. When I was six months pregnant we found Living with Trisomy 13, a web site for families. We came to know many living children and their families and discovered these children were very special and loved, that some did benefit from medical intervention, and that while the experience was challenging, it was life-changing for the families.

Me: How did you decide to continue with the pregnancy?

Barb Farlow: It wasn't a process, it was immediate. By the time of the diagnosis, I had grown to love my baby and felt very protective of her. I realized the odds were against her even coming to term, but it didn't mean I would take steps to end her life. The geneticist said “We don’t do surgery on these kids” and an obstetrician later told us: “You don’t crack the chest open for these little kiddies.” That prompted us to meet with staff from three departments at the children's hospital to ensure that if Annie needed life-saving surgery, she would be eligible for it. We were told she’d be treated like any other child. We knew surgery might not be indicated for her – that it might be too burdensome or not in her best interest, but we didn’t want the door closed on account of her genetic condition or disability. We wanted full information about the benefits and risks of any treatments so we could make good choices.

Me: What were your hopes and dreams for Annie?

Barb Farlow: We wanted her to have a chance. We wanted her to survive as desperately as any parent wants their child to survive. We were well aware of the disabilities and challenges she would have. My husband had taken an indefinite leave from work so that we could both devote ourselves to Annie and our other children. We wanted Annie to have comfort and happiness and we knew that through loving her we were going to learn so much. With Annie, we took nothing for granted and lived each day to the fullest. One clear, hot night, when everyone was asleep, we took Annie outside and looked at the stars together. We viewed life differently when Annie was born. Her first smile was like magic.

Me: How was Annie affected by Trisomy 13?

Barb Farlow: When she was born, we learned she didn't have the brain defect or the major cardiac condition they predicted. She was seven pounds, with Apgar scores of eight and nine out of 10, which was amazing. We were more shocked than anybody. She wasn't blind or deaf, which was a possibility, and she didn't have any major structural deformities in her organs. As we were rejoicing about how well Annie was doing, a medical fellow asked my husband: "Do you really want to treat this child? She's going to have these disabilities." He suggested she shouldn’t be treated, irrespective of her physical status. It was like a slap in the face. Annie was treated in hospital for six weeks for low blood sugar and received excellent supportive care at that time.

Me: How did Annie die?

Barb Farlow: We only recently received the medical certificate of death and it lists respiratory distress that began one month prior to her death. When we took her to the outpatient clinic two days before she died – because she was having trouble breathing and her face was beet red – we were told it might get better on its own and sent home with no tests and no measure of comfort for her distress. Earlier on, a pulmonologist had suspected she had a tracheal disorder, but she was never tested for it. When she was rushed to hospital in acute distress for a tracheal assessment, we were told her trachea was fine, but she had pneumonia. She didn’t. We later learned that throughout her life, doctor after doctor ignored critical indications of impending respiratory failure. Meanwhile, we were led to believe that Annie was receiving full care.

Me: How are children with serious genetic conditions viewed in our culture?

Barb Farlow: Especially with the financial challenges in our health system, I think there's an element of anger similar to how some people feel when a person is obese or a smoker and needs expensive medical treatment. There's the perception: "This is a choice, a life choice, we have ways of preventing these things." I think there are many in health care who see these children this way – as something we can avoid and have the ability to avoid. There's a perception that if a child isn't perfect, it's cruel to bring them into the world. It's expected that the vast majority of women are having testing and will terminate for these conditions. I think it's a challenge for health-care providers to have compassion and see value in our children when it's a road they wouldn't have taken themselves. Especially when there are limited resources and they're already short of NICU beds.

Me: What about in the community at large? Did you feel supported as a mother who chose not to terminate a child with a genetic condition?

Barb Farlow: I had a sense that most of our friends and neighbours wouldn't understand our choice, so during the pregnancy I confided in only a few close friends. It's unfortunate, because a person needs a lot of support at that time, but the support doesn't exist. When you terminate in our system, you're given a gift package – with hand-knit booties, a swaddling blanket and a kit for making footprints. There are support groups and psychological counselling and it's all there to help you go in that direction. If you choose not to terminate, you're on your own, with some of your friends and relatives thinking you're crazy.

Me: How has the rise of prenatal testing influenced public perceptions about children with genetic conditions?

Barb Farlow: I believe it creates the perception that we have a cure for these conditions. There’s a sense of “I’ve done all my prenatal screening and testing, I have a right to a perfect baby.” I’ve heard from genetic counsellors that more women are terminating for less serious conditions like cleft lip and palate, or club feet. I think we need to review whether the training doctors receive allows them to counsel in a neutral and balanced way. I found an educational presentation online created by Ontario’s Fetal Alert Network that included a photo of a stillborn child with a severe deformity related to Trisomy 13 placed next to a picture of a one-eyed Cyclops from Greek mythology. This was a terribly dehumanizing picture. When a family doctor has a patient whose fetus has been diagnosed with Trisomy 13, what picture will come to his mind? Annie had an extra finger on both of her hands. But she wasn’t less human.

Me: You’ve spent the last three years sharing Annie’s story across North America and further afield. What do you hope to achieve?

Barb Farlow: I hope I’ve opened the eyes of health-care providers to how a family makes decisions and how they feel. I hope I’ve held a mirror to them to reveal how their actions or inactions were perceived by a family. I think there’s a group-think approach in health care to issues related to disability. Everybody does what everybody else is doing and no one thinks for themselves. I believe a lot of denials of care are tacit and “let’s all do this because we think everyone is doing this" and based on the assumption: "These kids are hopeless and no one wants them.” I hope I’ve changed that, and allowed providers to start thinking about things in a different way, so they can stand up and speak for what they believe is right.

We know that our decision was not a common one, but we believe parental involvement and consent in treatment decisions are critical. I think there should be a requirement that children with complex conditions have a clear treatment plan documented in their file that includes the parents’ values and wishes. The issue is consent, and if the line is crossed now, on this genetic condition, what other conditions will be crossed? Down syndrome is also a genetic condition in every gene, and we don’t call it lethal. Sometimes children with Down syndrome have things that need to be fixed, and we fix them.

Me: What advice would you give a parent who’s chosen to bring a baby prenatally diagnosed with a genetic condition to term?

Barb Farlow: Number one would be communication. It’s important that the doctors know you’re aware of the challenges of the medical condition, that you’re realistic and realize you might have to make difficult decisions. Emphasize that you want to make decisions based on medical reasons and not quality-of-life reasons, that you’ve accepted the disability. It’s helpful if you connect with other families of children with similar disabilities prenatally, so you can say you’re aware of what you’re getting into and you’ve made the commitment.

Ask a lot of questions about tests and their outcomes and continually restate your position regarding the level of care you want. You may be afraid to ask questions because you’re afraid of the answers. It’s natural, as a parent, to be afraid of bad news. But you must ask anyway. After Annie’s death I was asked by the chief of a hospital department why I didn’t challenge the doctor at the outpatient clinic we took her to when her face was beet red and he sent us home. I wouldn’t have dreamed of challenging a doctor at that point. We trusted them.

At the international level, groups for Trisomy 13 are trying to get a short medical primer developed that lists the various associated conditions and treatments so that parents can speak intelligently about the issues with their doctor. Connecting with other families prior to your child’s birth is a very important way to get educated.

Click here to read an overview of Annie's story.

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Sweet dreams

I recently heard about a family with two children with disabilities. Dad sleeps with his son with autism in one room, and mom sleeps with the child with a physical disability in another room.

Sleeping with a child past the time considered normal is part of life for some families of children with disabilities – for a number of medical, behavioural and developmental reasons – although it’s rarely talked about.

Maybe your child has seizures or another life-threatening condition. Maybe your child has a sleep disorder or muscle spasms that jolt her awake repeatedly. Or maybe, like me, your child has physical and developmental disabilities, and chronic pain, and you find it difficult to be hard-nosed about who sleeps where when he slips into your bed in the middle of the night.

My son is 15 and the size of a five-year-old. He has frequent joint pain and can’t speak, and his ability to use sign language doesn’t match what goes on in his head. He can’t fully express what he’s feeling. He can’t tell me everything that’s going on.

So when he brings a book to my bed to fall asleep at bedtime (and is later carried to his bed by his Dad), or slips into our king-size bed after sleeping a few hours in his room, my first instinct is that I want to provide comfort to a boy whose everyday life is hard.

At the back of my mind, critical thoughts may jostle for attention: “He’s 15-years-old. It’s not appropriate that he sleep in your bed. Your job as a parent is to create independence. What will you do when he’s an adult?”

But they usually fall away quickly because my primary goal is that he feel safe, secure and sufficiently relaxed to sleep.

It’s not every night that this happens. But it can be a few times each week. Or sometimes it goes in spells, where he’ll sleep well in his own bed for weeks at a time.

Am I wrong?

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The politics of funding

By Louise Kinross

I was putting together the science roundup for the December issue of BLOOM magazine and couldn’t help noticing that six of eight recently published research studies about childhood disability focused on autism.

Given autism affects one in every 150 children, it wasn’t surprising that a large chunk of research dollars would be invested in treating this disorder. But I wondered whether funding to develop treatments for, or improve quality of life in, other conditions reflected how commonly they occurred in children.

I recalled a fascinating fact sheet from the Cerebral Palsy International Research Foundation (CPIRF) earlier this year that compared the prevalence of well-known childhood disorders with the amount of research funding they received from U.S. federal government and private sources.

For example, muscular dystrophy affects one in 8,000 children but received $47 million in federal funding this year. Cerebral palsy affects one in 278, but received only $16 million. Autism, at one in 150, received $105 million.

On the private side, muscular dystrophy research drew $310 million, autism $15 million and cerebral palsy $2 million.

I asked Dr. Mindy Aisen, medical director of the CPIRF, to explain the disparity.

“It’s a matter of access to media and funds for lobbying politicians,” Dr. Aisen said. “At the end of the day, research funding does not equate to prevalence. It’s political, and politics is influenced by the media and lobbying. Cerebral palsy is terribly underfunded proportional to its enormous prevalence – which has gone up dramatically in the last decade as a result of the rise in multiple births associated with fertility treatments and our ability to save premature babies.”

Dr. Aisen noted that Jerry Lewis was a media champion for muscular dystrophy research and “autism exploded on the scene with a huge media campaign by Autism Speaks. They’ve done a phenomenal job of making autism a political issue and God bless them.”

Unfortunately, cerebral palsy doesn’t have high-profile celebrities to take its message to the masses and the CPIRF board chooses to put its money into research rather than lobbying.

Dr. Aisen noted that raising research dollars for autism may better capture the public’s imagination because it’s a disability that isn’t apparent at birth. “Children with autism start out looking great and everyone has the expectation that this delicious toddler will be totally functional – and then at age three parents lose that hope. With cerebral palsy, problems are usually apparent from the beginning. There’s still a huge stigma attached to physical impairment. People see a wheelchair and look away – especially if it’s a child in a wheelchair.”

The marketing of high-functioning autism and Asperger’s is also reflected in the recent spate of movie characters with the conditions. “There’s something very appealing about children who are extremely intelligent, mathematical and computer savvy and the sense that if only we could overcome this problem, they could contribute so much.”

Disparity in research funding also exists between disabling childhood and adult conditions. “In large part children’s conditions are far less well funded than any adult condition,” Dr. Aisen says. “Children don’t have a voice. In the end, people fight for what’s most relevant to them.”

That may explain the explosion of stem-cell research funding for end-of-life conditions like Parkinson’s, Alzheimer’s and stroke, but the lack of a single stem-cell clinical trial for the treatment of cerebral palsy. “Imagine how stem cells might be even more powerful in the highly plastic brain of a baby,” she says. “The lack of stem-cell research for cerebral palsy is mind-boggling.”

Dr. Aisen says we’ve never been closer to scientific discoveries that can benefit children with cerebral palsy. “We have such powerful pilot data and ideas and research talent, we just don’t have the funding for clinical trials.”

Constraint-induced movement therapy (CIMT) – based on the premise that new motor pathways can be laid if a child with one-sided weakness is motivated to use the weak limb by casting the strong one and developing engaging virtual-reality and robotic applications that give the weak side a repeated workout – shows great promise, she says.

“We have the technologies and techniques that we know make an impact and if we just had a bit more research we could really explore how much, when, and what combination of things works best. The National Institutes of Health and National Institute of Neurological Disorders have supported work into CIMT, but it hasn’t reached level-one evidence, which means double-blind, randomized control trials, which are expensive. No one is funding those studies. We need level-one evidence to convince policy-makers and insurers so that this therapy is offered in schools and paid for by Medicaid.”

Dr. Aisen says research into autism and cerebral palsy takes place in unnecessary silos. “We have two major developmental disorders of the brain that have overlaps. Many with autism have seizures and motor disorders (tics, lack of coordination and decreased muscle tone) and a meaningful number of people with cerebral palsy have symptoms that place them on the autism spectrum. We need to talk and exchange techniques and technologies and leverage resources.”

Other childhood disabilities face different funding challenges. Parents of children with Down syndrome worry that if cases continue to decline as a result of better prenatal diagnostic tools and higher abortion rates, funding to study the condition will dry up.

And then there are rare conditions – like that of my son Ben. When he was born, there were only 60 reported cases of Langer-Giedion syndrome in the world. Rare syndromes have no political leverage unless their study can be shown to shed light on more common diseases. For example, one of two genes deleted in Langer-Giedion syndrome is a tumour suppressor – which has made it of interest to cancer researchers.

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