A therapist finds herself in parent shoes

At five days old, Lucas Puchta had an MRI.  

He was born with a port wine stain on his face, which can sometimes be a sign of Sturge-Weber syndrome, a rare disorder where an excess of blood vessels is found on the face and the brain, causing an increased risk of seizures and other symptoms. 

Lucas’ mom Lizna was told that the MRI came back clear, “so I put it behind me,” she says. “Other than being told that he had a life-time risk of developing glaucoma due to the location of the port wine stain, he was developing normally.”

At seven months of age, a resident informally told Lizna that one of Lucas’ more recent scans looked like Sturge-Weber. At nine months, just two weeks after being formally diagnosed, Lucas had his first seizure. In the next 10 months he started bumping into things on his right, developed stroke-like episodes, absence and myoclonic seizures, and lost all skills, putting him in the first percentile for his age.

What was unique about Lizna’s experience was that she'd worked for 10 years with children with disabilities, mostly as an occupational therapist. “I had fought for my families when I worked in pediatrics, but could I fight for my own?” she asked herself. “I didn’t know if I could do this.” Lizna explains why it was so difficult to be on the other side of the fence.

BLOOM: You said professionals didn’t listen to you.

Husnani-Puchta: ‘Wait and see’ was always the answer we would get. That was frustrating because they talked to us as if we didn’t really understand much, or didn’t do our homework. It’s not a common condition, but I felt like I had to do all the educating. Over and over again, in hospital, we were asked: ‘So what is this condition?’ I’m in a hospital and my child is having a seizure. I’m sorry, but do your homework before you come in to see the parents. You have access to his health records. Look at them.

BLOOM: Did you feel your concerns were taken seriously?

Husnani-Puchta: No. After Lucas first went on seizure medication we noticed he was bumping into obstacles on the right side of his world. He wouldn’t notice food that was placed on the right side of his tray. I said ‘I don’t think he sees on the right’ but was dismissed. I was told it could be an effect of the meds and that it was hard to know because he was so young. Three months later, in emergency due to stroke-like episodes, we were told: ‘Yes, you’re right. He does have visual field defect’ which means he only sees half of the world.

BLOOM: What was it like to see Lucas lose the skills he had?

Husnani-Puchta: I broke down. I felt I had lost my son. His body was there but his personality was gone. My son is an engaging, social boy who loves to walk and loves to interact with his environment. He had signs, he had words, and he lost all of that. He didn’t respond to questions he knew like ‘What does a lion say?’ and there was a huge regression in his motor skills.

I would send e-mails to his neurologist and neurology clinic nurse and leave messages on voice mails crying, saying ‘You have to do something. The medication isn’t working. The meds just make him more and more sleepy.’

BLOOM: I understand Lucas had an emergency video EEG that showed that the disease had progressed from the left to the right side of his brain?

Husnani-Puchta: Yes. We were finally shown all of the EEGs and MRIs and we could see how the left side of his brain was shrinking due to the seizures. I was flabbergasted. They said he was a good candidate for surgery to remove the diseased portion that was causing the seizures and disconnect the left from the right part of the brain. He had the surgery a month after this meeting, spent 10 days in hospital and then was transferred to Holland Bloorview.

BLOOM: How did he respond?

Husnani-Puchta: Amazing! I have my son back. He’s seizure-free. Every week he is showing new skills. He smiles, he laughs, he engages and he knows how to get you to laugh. He’s walking, he has words, his brain is reorganizing and creating new pathways. 

He still has the visual field defect but he’s aware now, he’s present, he’s learning that things can be behind him. At our last family team meeting, specialists from the Canadian National Institute for the Blind sat in and they were shocked at how well he was doing with his vision. 

If you’re on the third floor everyone from the kitchen staff to nurses to cleaning staff know Lucas because he has his wave and he does his fly kisses and he says ‘uh oh’ and ‘go, go, go.’

BLOOM: Lucas had his surgery at 19 months. Do you feel he got it soon enough?

Husnani-Puchta: I think if he’d gotten an MRI with contrast dye sooner, and if we were taken seriously, and if there was more awareness among the various professionals about Sturge-Weber, maybe we’d be in a different place. Maybe he wouldn’t have developed seizures or his seizures would have been controlled better. It was almost eight months before Lucas was assigned one staff neurologist. Before that we were bounced around in the department and seen by a different neurologist each time. After my emotional plea around receiving appropriate care and the lack of improvement in Lucas' seizures, the department finally assigned us to one staff neurologist.

Other countries have programs in place to increase public awareness about Sturge-Weber: programs aimed at prevention, early detection and diagnosis, professional training and funding for centres of excellence. In the U.S. they have 10 centres of excellence where the doctors focus on research and treatment and everything to do with Sturge-Weber. I think I would have been taken seriously there.

BLOOM: Has this experience made you reflect on the families you work with?

Husnani-Puchta: I don’t know what would have happened if I didn’t advocate. If I didn’t cry. If I didn’t write e-mails. I don’t think we would have had that surgery as early as we did.

Going through that process has made me realize: What do parents do when they don’t speak English? What do they do when they just accept whatever the doctor says? What happens if they wait, like they’re told to do, and they don’t knock on that door? And it’s not just about the surgery. I knew the system. I knew to put Lucas on wait lists for speech and early intervention. I knew there were preschools for kids with special needs. But professionals didn’t tell me about them. I knew they existed because of my work.

BLOOM: When you return to work as an OT, how may you approach it differently?

Husnani-Puchta: I’ll be more empathetic, because I know what they’re going through. I am going to provide them with any tips and strategies and resources I can. And because I know they can’t remember everything, I will make sure I provide the information not only verbally but in writing as well.

BLOOM: How can we build empathy in professionals who don’t have first-hand experience parenting a child with special needs?

Husnani-Puchta: Actually listen. There has to be a course on listening. Because so often the follow-up questions we got indicated that professionals weren’t listening. I would list so many concerning things about my son and the response would be: “So how’s he doing otherwise?” It was like they didn’t hear anything I had just said. And they don’t read between the lines.

BLOOM: Did you feel that you understood your families before you had Lucas?

Husnani-Puchta: I thought I was empathetic but my level of empathy wasn’t where it is now. When a family is dealing with multiple issues in one child, as well as managing appointments, paperwork, funding, communicating with all team members and let's not forget about advocating, it’s a full-time job.

It’s so hard to do everything and get it done right and follow through with programming goals at home. I can see why families are so exhausted. When parents don’t do their homework it’s not that they don’t want to, or that they’re not complying.

I was exhausted mentally dealing with Lucas’ safety, with making sure I put on his helmet, with timing how long his seizures lasted, with deciding whether to give Ativan and/or whether to go to the emergency room, and on top of that was all the therapy stuff I could to be doing with him at home. 

But he’s not even present, I’d think, he’s not here. Why should I be following through with recommendations for his vision, speech, cognitive and motor development? I didn’t want to be his therapist. I wanted to be his mom.

BLOOM: I understand you want to create better awareness of what families go through?

Husnani-Puchta: I do have a passion to raise awareness and I am willing to talk to any parent, regardless of disability, to share with them the resources I know of. Because even when I knew my resources, I still had difficulties. 

For example, funding through Special Services at Home has been frozen since I began working as an OT. Yet most online information includes this as a possible funding avenue for children with special needs, giving false hope in my opinion. And the income cap for Assistance for Children with Severe Disabilities hasn’t changed in a decade, even given inflation in a city like Toronto. 

We were denied care for Lucas through Community Care Access Centre and not notified when he didn’t qualify for services. It was frustrating falling through the cracks of our health-care system and experiencing this firsthand.

I’ve got a Facebook group for Lucas and I try to post as much as I can. If just one family can learn from our experience navigating the Canadian health-care system, I’ll have done what I wanted to do.

BLOOM: What most helped you cope during Lucas’ illness?

Husnani-Puchta: I think finding a similar family to talk to. I found support groups a bit overwhelming, but through social media I was able to connect with another mom in Ontario whose child has Sturge-Weber and went through the same surgery as Lucas. We talked for an hour-and-a-half. I always asked to be connected to other parents at the hospital, but no one ever followed up.

BLOOM: I understand you have plans to create practical information for other families whose kids have Sturge-Weber?

Husnani-Puchta: There’s excellent information online about Sturge-Weber in the U.S., but nothing about the Canadian experience. Another parent and I would like to create resources for families in Ontario and then move across Canada. Our children are affected in so many areas. As an OT, I was fortunate to have worked in pediatrics. I knew about these resources. But most families are not in my shoes.

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Advice to parents on diagnosis day

Mothers and fathers were asked what they might have told themselves on the day their child was diagnosed in this video by Elizabeth Aquino. Thanks to Elizabeth and all of the parents who participated!

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One child, 10 conditions, no diagnosis

One child, 10 conditions, no diagnosis
By Julie Drury

Our daughter Kate (above) had 10 medical conditions but no diagnosis. Episodes of repeated vomiting, pain and racing heart rate sent us back to the emergency room -- over and over and over again.

Imagine arriving for the 10th time, your toddler presenting with the same unexplained symptoms. Armed with a binder that contains your medical journal, a list of countless specialists and ever-changing medication schedules, you tell your story to the triage nurse, then a resident, then a doctor. After hours of waiting, you move to an inpatient ward, where you repeat your child's complicated history again – to a student, a nurse, a resident, an attending physician and many specialists.

No one knows your child and no one knows what's wrong. You're afraid, frustrated and exhausted.

This was life for our family.

At nine months, Kate became acutely ill with episodes of cyclical vomiting, pain, lethargy, high heart rate, low oxygen saturation and severe anemia. Our family doctor seemed overwhelmed with her symptoms and began treating her for reflux. His advice was to take her to emergency at the Children's Hospital of Eastern Ontario (CHEO) in hopes that they would identify the underlying problem. We rushed there more than 20 times in the first 2.5 years of Kate’s life and had many hospital admissions.

In addition to serious medical problems, Kate was losing her hearing during this time and was eventually diagnosed with global developmental delay. To address this, we added rehab professionals to our long list of specialists: occupational, speech and physical therapists, auditory-verbal therapists, psychologists, a developmental pediatrician, integration support workers, school board advisors and community care access staff. On a daily basis, we juggled therapy, clinic visits, tests and chronic illness. Every six weeks or so, Kate became seriously ill and we'd rush to emergency.

Kate’s severe episodes often happened in the evening and escalated throughout the night. In the early days, my husband and I would take Kate to the hospital. We needed two sets of arms to cuddle and comfort her. We needed two sets of ears to listen to the doctors and understand how they were going to treat her. Over time we settled into a routine of me taking the lead and my husband taking the night shift during hospitalizations. Every hospital trip involved asking friends and neighbours to care for our older son.

With no diagnosis and no doctor overseeing Kate's case, I became Kate's medical advocate and coordinator. I tried to ensure that all of her specialists were up to date on the approaches pursued by each. I kept a detailed journal and concise medical summary because her enormous medical chart wasn't always available during clinic visits. And it was too long to be read and absorbed during an emergency room visit or hospitalization.

After two life-threatening events, I worked with a discharge planning coordinator to pull together case-conference meetings about Kate. We wanted better coordination of care, and a solid plan to support Kate and our family when we showed up in emergency.

I was taken aback when our simple request for a triage letter outlining Kate's conditions and protocol for care was met with reluctance. None of her specialists wanted to take the lead. Each felt uncomfortable being the point person for a child with a complexity of medical issues.

We couldn’t keep this up.

Then, during a long admission in February 2010, we heard about a new pilot program at CHEO. The Coordination of Complex Care Program (CCCP) aims to improve care for children who are medically complex and fragile. The team supporting a child includes a 'most-responsible physician,' a nurse and family-care coordinator, and a nurse practitioner. These professionals ensure that information is shared and coordinated among specialists, the community pediatrician and community organizations (integrated support services, community care, therapists, schools, social worker).

A single point of contact for hospital admissions meant that someone finally 'knew' Kate. For us, that someone was Dr. Natalie Major. Dr. Major knew Kate's medical history, had a protocol in place to treat her, and could adjust it as necessary. We weren't constantly repeating our story and trying to educate different doctors.

The CCCP has changed our lives and, most importantly, changed Kate's life. Shortly after being admitted to the program, a major health crisis due to poor medical coordination was averted. It’s been two years since we joined the program, and we’ve seen many benefits.

We make less emergency trips. We have a medical protocol in place to ensure Kate’s efficient and effective care. We have a triage letter that explains her condition and outlines how she’s to be treated. There is better communication and collaboration between her specialists. Because procedures are coordinated, Kate has fewer pokes for bloodwork. If she needs a general anesthetic, Dr. Major leads a full case conference to ensure all aspects of her complicated condition are considered.

Our family -- once incredibly alone and burdened -- now copes with solid medical support.

The reality is that children like Kate, who are medically fragile and complex, are living longer. While they make up 12 to 18 per cent of the population, their care produces up to 80 per cent of the health-care bill. They have chronic conditions and are usually dependent on technology. They spend a lot of time in emergency rooms and hospitals. Their health can be improved – and pressures on the health-care system reduced – by putting programs like CCCP in place.

I’m happy to say that Kate’s health has stabilized over the last 12 to 18 months. She continues to have her acute episodes (26 to date). But because of Dr. Major’s early intervention, the episodes are handled efficiently and quickly. This minimizes our trips to emergency and the need to hospitalize Kate. Since joining the program, Kate’s underlying diagnosis has been confirmed. She has a rare form of Mitochondrial disease.

Families who can’t access programs like CCCP are suffering. They shouldn’t have to experience fear, frustration, burn out and financial ruin. Their children shouldn’t be at risk for medical error or omission because they are so complex. They shouldn’t have to consider moving to another part of the country to get the services they need.

Innovative programs like CCCP demonstrate that there is a way to keep these children out of hospital. But in Canada, these programs are few and far between. Our program – a two-year pilot – now has one year of project funding. We will continue to fight for funding and recognition of its importance. Medically-complex children – who weren’t part of our community only a few short years ago – deserve this essential care.

Learn more about Kate Drury and her family at Caring Bridge.

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New autism definition makes sense, a clinician-scientist says

Media reports about changes to the definition of autism have led to fears that some children would no longer meet criteria to get services.

An expert panel of the American Psychiatric Association is proposing a change as it prepares the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM) – the first major revision in 17 years.

I interviewed Dr. Jessica Brian, a clinician-investigator in the Autism Research Centre at Holland Bloorview, to learn more.

BLOOM: What are the proposed changes?

Dr. Jessica Brian: The proposed changes are to have a single term – autism spectrum disorder (ASD) – that includes children who would previously have fallen into one of three categories: autism, pervasive developmental disorder – not otherwise specified (PDD-NOS), or Asperger syndrome. They’re also talking about collapsing the idea of social deficits and communication deficits, since there are so many overlaps between the two. There will not be a single category for social deficits and a single category for communication deficits but one category called social communication. In that category you have to meet criteria on all of the items but the items are extremely broad and inclusive.

BLOOM: Are there advantages to the old system of three definitions?

Dr. Jessica Brian: Not really. Currently there isn’t evidence to support this distinction between three sub-categories. Most of the research out there doesn’t find differences in terms of genetic susceptibility – so the three sub-categories seem to have the same genetic basis. That’s why you’ll find a family where one child has Asperger’s and one child has autism. And prediction of outcome isn’t supported by the three distinctions. When we follow kids in research we find they typically stay within the spectrum, but they move up or down in terms of whether they meet the full criteria for autism or the fewer criteria for PDD-NOS. We don’t think of them as separate disorders, but as different intensities across a continuum. In my clinical work, the distinctions between the sub-categories can also be confusing for families.

BLOOM: I’m surprised, because I thought diagnosing a child with autism was more precise?

Dr. Jessica Brian: If you have a room full of autism experts seeing one child, they will usually agree that the child fits somewhere on the autism spectrum but there will not be good agreement about which sub-category. It is challenging to identify exactly where a child sits on the autism spectrum and that’s what’s prompted these recommendations.

BLOOM: Are there any other advantages to having one definition?

Dr. Jessica Brian: We think one definition could expedite the assessment process, because we won’t fuss about whether the child has PDD or autism, we just know they have ASD and we can move them into services more quickly.

BLOOM: I know there’s been concern by parents that higher-functioning children will no longer qualify for services.

Dr. Jessica Brian: In Canada it’s extremely unlikely that kids with existing diagnoses would ever be re-diagnosed unless parents specifically want it and seek private assessments. There aren’t the resources in the public system to re-diagnose these kids. So the fear of losing services is unwarranted, at least in Canada. I know people in the U.S. are worried about losing insured services but I have to ask the same question: Who is going to reassess all of these kids?

BLOOM: What about findings that are reported to show that only 45 percent of the highest-functioning kids would qualify for the new diagnosis?

Dr. Jessica Brian: That’s just one piece of preliminary evidence that hasn’t been published yet. A study published in January found that 12 percent of higher-functioning individuals might be missed by the new criteria, but if only one criterion was removed, almost all kids would be included. It’s important to note that we have to find ways to provide necessary services to kids who have needs even if they don’t meet full criteria for a diagnosis. Some kids will still need communication or social or behavioural supports even if they don’t get a diagnosis of ASD. We need to keep this in mind and keep pushing for needs-based access to services.

BLOOM: Is the broader definition positive in that children aren’t as pigeon-holed when they’re first diagnosed?

Dr. Jessica Brian: Yes, we can say that they will most likely stay on the autism spectrum, but developmental changes are very possible.

BLOOM: I guess there will be some resistance to the broader definition?

Dr. Jessica Brian: According to the proposed changes, the term Asperger won’t be used in the DSM. But I suspect there will be a strong group of people with Asperger’s who self-identify that way and I would expect that that term will remain alive among individuals who have those characteristics. There is a culture of Asperger’s that we won’t lose anytime soon. It’s a badge of honour, a characteristic many people are proud of.

BLOOM: It doesn’t sound like the change in definition will have a significant impact on our work here?

Dr. Jessica Brian: We’ve been using the term ASD for many years even though it’s not in the DSM4. And the reason we’ve been using it in research and clinical settings is because we’re aware that those sub-distinctions aren’t always that helpful or meaningful.

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The good doctor

My previous post described our harrowing experience with the first pediatrician who examined our son an hour after he was born. Thankfully, we had another very different experience with a doctor who assessed Ben when he was three days old.

The story continues the night Ben was born...

The doctor thought it was a chromosome problem, but he didn't know what, and when pushed by D'Arcy, he said Ben had a 50 per cent chance of having brain damage.

How could we figure out what Ben needed? Could he see a geneticist?

There was nothing to be done that night, the doctor said. He’d be back in the morning.

From 3:30 to 6 a.m. we tried to get Ben to latch on to breastfeed (he had an unusually small mouth and receding chin) but despite guidance from a lactation nurse, we weren't successful.

We bottle-fed him and D'Arcy collapsed on a cot. I held Ben and sang him "happy birthday" – something I had planned, but not with tears streaming down my face.

The doctor returned with a furrowed brow and a list of seven things that were "wrong" with Ben. In addition to his facial anomalies, he had a larger-than-usual liver and undescended testicles.

They kept him a night to monitor his breathing and then the doctor said "you can take him home," explaining that as it was Sunday, a geneticist at a nearby children's hospital wasn’t available to assess him.

"What about his breathing?" I asked, reminding the doctor that he was born with irregular breathing and had had some dusky spells.

“If he has trouble breathing, just drive him over to SickKids' emergency department.”

SickKids was at least a 15-minute drive from our house.

“How will we get him in to see a geneticist?”

The doctor was leaving on a ski trip, he said, but if I called the hospital maternity ward first thing Monday morning, the clerk would make the referral.

We took Ben home and he slept in his car seat – like a china doll – propped up in our bed between the two of us. At 8 the next morning I called the ward, only to be told that a physician had to make the referral and they knew nothing about it.

Our midwife encouraged me to call a different pediatrician – a Dr. Till Davy. I reached the nurse at his office and read off the shopping list of "defects" the doctor had given me.

A few minutes later a man with a precise, staccato-like voice came on the line and introduced himself – in an Austrian accent – as Dr. Davy. He had a soothing, melodic way of speaking that made you feel he was genuinely interested in what you had to say.

"Our son was born on the weekend," I began.

"Congratulations!" boomed the voice on the other end.

Had Dr. Davy pressed the wrong line?

"Could you be so kind as to bring Benjamin in at 5 p.m. today?" he asked.

At 5, a tall man in a white coat with a meticulously-groomed haircut and beard enthusiastically reached out to shake our hands and congratulate us. Even his stethoscope – clasped by a small stuffed koala bear with magnetic arms – was friendly and lighthearted.

Dr. Davy picked Ben up like he was holding a priceless vase, and laid him on the examining table. For the longest time, he just looked Ben closely in the eyes – admiring what he obviously considered to be a mysterious and sacred new life.

Ben gazed back.

Then he began to physically examine Ben, poking and prodding him, peering into his ears and eyes and tapping on different parts of his body. The hospital doctor had touched Ben impassively – like a machinist turning over a defective product. Dr. Davy delighted in him as a most intricate, fascinating puzzle.

Ben's eyes locked on him as his sing-song voice flitted from an intimate whisper in Ben's ear to a hearty laugh and a light blowing on his tummy.

Dr. Davy quickly ruled out any problem with his liver. Ditto that he had a cleft lip and palate that needed surgical repair.

Finally, his verdict: "I think he has a syndrome," he said in his lyrical voice, his eyes still fixed with reverence on Ben’s. There was no judgment in his words, no devaluing or disapproval, simply an estimation of the way things were.

He faxed the referral to the geneticist.

In those moments – which added up to exactly two hours passed closing time – Dr. Davy gave us our son back.

I hugged him.

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How could my son's birth be 'wrong?'

They are words that will be seared in your memory – as fresh and raw as the day you first heard them.

When you learn your newborn has a disability or health problem, the words a doctor uses to share the news can build you up or tear you down.

"He has anti-mongoloid eyes, low-set ears and a bit of a hare lip," the doctor told us. He was obviously annoyed at being called out at that time of night and he didn’t like what he saw.

Ben – the sacred being that had grown in my body like a new limb – lay naked under the stark, fluorescent light. The doctor had unswaddled him and was inspecting him, piece by piece.

I hadn’t noticed anything unusual about Ben’s eyes. I had always loved the metaphor of the eyes being windows to the soul. I knew that mongoloid was an archaic term for Down syndrome. What on earth did ‘anti-mongoloid eyes’ mean?

“In Down syndrome, the eyes slant up,” he said. “Your son’s eyes slant down.”

He said our son had "something like a cleft palate," shook his head and muttered: "the timing wasn't right."

How could my son’s birth be wrong? My jubilation – a brilliant, burning fire – was now flickering in the wind of a competing grief.

The doctor said these were soft signs for mental retardation, though he didn't know what he was dealing with.

Sensing our mounting anxiety, he made an attempt at a joke. "Did you hear the story about the doctor who comes to examine a newborn, sees the baby's mongoloid eyes and tells the mother that the baby has Down syndrome? Then the father comes into the room and the doctor realizes he's Chinese – ha, ha, ha!”

My boy was only an hour old.
Research shows that mothers remember the first words a doctor uses to describe a baby’s disability or medical condition – and the way it’s communicated – decades later.

How did your physician communicate the news?

An article published in the journal Pediatrics last week provides guidelines on how doctors should deliver a diagnosis of Down syndrome, based on a literature review of best practices.

I think the guidelines are relevant to any newborn diagnosis.

They include that obstetricians and pediatricians jointly deliver the news, in a private setting, with both parents together, and provide accurate, up-to-date information. That includes reading resources and local support group contacts.

Most important, the researchers recommend that doctors:

-Begin the conversation with positive words, such as congratulating the parents on the birth of their child (this may sound like common-sense, but we didn’t hear the word congratulations from a health professional for days. Instead, they darted in and out with their eyes down).

-Use nonjudgmental language, avoiding words that convey pity (“I’m so sorry”) and tragedy (“Unfortunately, I have some bad news” or “I know this might seem like a devastating loss.”). It’s “unnecessary and not always reflective of mothers’ emotional states,” the researchers say. Further, conversations should not involve unsolicited personal opinions.

The article notes that in a 2007 survey of 2,500 medical school deans, students and residency directors, 81 per cent of medical students report they don’t get clinical training about people with intellectual disabilities and 58 per cent of deans say such training is not a high priority.

No wonder sharing this kind of diagnosis with sensitivity is so challenging.

Dr. Brian Skotko, a clinical fellow in genetics at Children’s Hospital Boston, led the 29-member team of health professionals that came up with the recommendations. Dr. Skotko’s research focuses on children with developmental disabilities. He’s co-authored two books related to families of children with Down syndrome and has a sister, Kristen, with Down syndrome. He writes about the study in an article called How to give a diagnosis of Down syndrome.

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At a dark time, bringing light

Sue Robins remembers what it was like to learn her son Aaron had Down syndrome shortly after his birth.

“We didn’t reach out to anybody. I remember lying in bed and thinking I wouldn’t get out of bed again. I was never going to laugh again or have a sense of humour. All the joy in my life had been taken.”

Six years later, she knows what would have helped: connection with another parent of a child with Down syndrome – someone who understood how she felt and could impart a sense of hope for the future.

When Aaron was five months old, Sue contacted the Edmonton Down Syndrome Society (EDSS). She asked to be connected with other moms of babies in the area and started an informal playgroup. Two years later, Sue co-founded the Visiting Parents Program at the EDSS.

Today, the volunteer program has 16 trained parents – including four dads – and has made 31 visits. The program is targeted to parents of a new baby with Down syndrome, but also serves parents who have received a prenatal diagnosis or who have a child with Down syndrome and are new to town.

I interviewed Sue about the program.

Me: What’s the purpose of visiting parents?

Sue Robins: To give information and support to parents who often feel very alone. Even at the time of birth, if there’s a question mark that the child may have Down syndrome, the parents are shuffled off to the private room at the end of the (maternity) hall, so right from the get-go they feel different. Our presence helps them know that they’re not alone. We want to celebrate the baby’s birth and sometimes that gets missed in the medical community, where the baby is looked at as a tragedy. We’re excited about meeting the new babies and holding them and for some parents that’s the first time that’s happened and it’s very powerful. We help normalize their experience.

Me: How does your program work?

Sue Robins: Most parents contact us by e-mail through our web site, but we also get calls from pediatricians’ offices, hospitals and genetics clinics. Within 24 to 48 hours we’re in touch by telephone. Sometimes a phone call is all parents need. If they’d like a visit, two of our parents will meet them where it’s convenient – in their home, the hospital, a coffee shop. We like to bring a gift. Depending on the family's needs, it may be a book of parent stories called Gifts: How Children With Down Syndrome Have Enriched Our Lives, or a more medically-oriented book. Sometimes we bring a baby blanket.

Me: What are the most common questions you get at visits?

Sue Robins: A big one is how is “how do I know how severe my child’s condition is?” We explain gently that there’s no way of knowing how your child will turn out, just like with any other child, it depends on a lot of factors. Many parents see the baby and not the Down syndrome, and they worry about when others will start to ‘see’ Down syndrome in their child. They want to known if people stare at the mall. Often there are concerns about how to tell friends and family. We let them know there’s no ‘right’ way to approach these things, it’s something many parents struggle with, and give them permission to figure it out in their own time. We share examples of what we and other families have done. Sometimes they want information on services.

Me: What can a parent offer that a professional can’t?

Sue Robins: We’ve walked down the same path these parents are on and a lot of what we impart is hope. We value and feel there’s worth in our children and we model that. We demonstrate that life goes on. We complement the role of health professionals by providing the human piece. Only we know what it’s like to have kids with Down syndrome.

Me: Are there key things you try to convey in your visits?

Sue Robins: We don’t want to talk too much. We want to listen and to be open and non-judgmental. Parents can be totally honest with us. We’re there to answer questions. We want them to know they’re not alone, that they’re well supported with services in Alberta, and we like to give them a little glimpse into the future, if they’re open to that. We bring a little photo album of our kids and leave it on the table. If they want to look at it they can, but they don’t have to.

Me: What kind of impact do you have on parents?

Sue Robins: I hope we lighten their load. I remember one visit we did in a hospital NICU where the father of the baby left after learning the baby had Down syndrome. When we first met the mom, things were really heavy and sad. One of us was cuddling the baby and at the end of the visit, the mom had a good cry – and we cried a bit too. We say it’s okay to cry. The social worker later told me that when the mom walked out of the room with us, she looked lighter, she acted lighter. We had helped take some of that burden off her.

Me: What do you get out of visiting new parents?

Sue Robins: I’d love for every single parent to feel supported. Part of my healing process is to ensure that my experience of feeling alone at the beginning isn’t what others experience. That’s very rewarding to me.

Me: How did you start the program?

Sue Robins: Another mother and I went to Calgary to hear about a visiting parents program there. On our drive back, we decided we wanted to bring the idea to Edmonton. So we brought a trainer from the Canadian Down Syndrome Society to run a six-hour workshop with the first eight parents on our team. We wanted to have a formal program where everyone on the team is trained. Professionals have to believe we’re competent in order for it to work.

Me: Are programs like this offered across the country?

Sue Robins: Not consistently. Most support groups do some sort of visiting but it’s informal. We’d love to share what we’ve learned with others who are interested in setting up formal programs. We have lots of resources.

Sue can be reached at sue.robins@shaw.ca. She’s speaking on the Visiting Parents Program at the World Down Syndrome Congress in Dublin this summer.

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