Based on interviews with 18 parents of preterm children with cerebral palsy, lead investigator Marilyn Ballantyne found parents commonly feel lost, unsure of what to expect or what services to ask for, and vulnerable.
The goal of the research is to identify how to best support parents during this process.
Parent suggestions for ways to improve the transition included recognizing the child as a whole, rather than separate parts of a diagnosis; better communicating what to expect; providing consistent information on a child’s diagnosis and appropriate services; and connecting parents to consistent health providers, including one that plays a navigator role over the long-term, and other parents of children with disabilities who can provide support.
BLOOM interviewed Kyoko, a Holland Bloorview family leader who worked with the research team to develop the interview questions for parents. We wanted to hear about her experience as the mom of twin boys born at 30 weeks gestation almost 14 years ago in Japan. At the time, Kyoko had three other children under the age of 10 at home.
BLOOM: Tell us about your twins.
Kyoko: They spent 99 days in the NICU, and one of the boys had health concerns. There were minor ups and downs with breathing, fluid intake, bowel movements and oxygen level in the blood, but they were monitored by machines. The nursing and medical staff were very supportive. I was anxious, to some extent, but every time I went to see the boys the staff gave me hope. There was a culture of acceptance created in the way the nurses practised. They were always professional, loving, calm and quiet. If a monitor went off due to a lack of oxygen, they would smile and gently pat my son on the back and say 'You forgot to breathe.'
We were only allowed to visit between 1 p.m. and 9, but that was okay because I had older children at home. All of the doctor visits or special appointments were done in the morning. The nurses kept a daily journal in a scrapbook for each patient documenting the services they received and how much milk they drank, how long they slept, and any activities. It was accompanied with photographs. It was a precious record and it would be ready for us when we got there to catch up.
BLOOM: What were you told in terms of their prognosis?
Kyoko: The day of discharge the chief pediatrician explained that they might have possible delays in speech, hearing, gross and fine-motor skills, because of their birth, and it had to be monitored. But then he said "Raise them as perfectly healthy children." I had previous experience raising children, so I thought 'okay.'
BLOOM: What was it like when they came home?
Kyoko: Full of surprises. We didn't anticipate how hard it would be after they came home, and the number of serious emergencies they would have. They developed life-threatening respiratory problems when they picked up the common cold from my other children.
The pediatrician had given us a brief explanation that they might have delays in development. In our case, breathing was the major issue. We weren't told what might happen, or what kind of therapy would be good for them, or which doctor to see for breathing.
I wish we'd had more information, but it was probably hard for the doctors to predict how the boys would be with three older children bringing home colds. One of our older children's classmates was battling a serious illness and her mother was very empathetic and helpful and played a navigator role for me. She helped with where to go and which practitioner to see and what needs to be done. She suggested the boys should be seen at a different hospital that had a 24-hour emergency unit.
BLOOM: How did you manage all of this with two infants and your older children?
Kyoko: The period between the NICU and rehab was very, very stressful. I was juggling three to four hospitals and running from place to place. We were dealing with different health issues as well as all of the regular checkups. The hospitals were spread out and the taxi bills were enormous (though still better than facing parking problems).
It was a maze of medical services and not knowing what to get and where. When I look back, there was a disconnect in that period between the NICU and the rehab hospital. You had to do everything by yourself and find the specialists. All of the diagnoses and care and services provided in the NICU had nothing to do with the problems the twins developed afterwards. In a way we were lost and thinking 'why is this happening?'
BLOOM: At what point did you suspect that one of your boys might have a disability?
Kyoko: We were back at the hospital often for treatment for common colds, and at one of those visits, my son was diagnosed.
BLOOM: What were you told?
Kyoko: It was very straightforward. He has cerebral palsy and he has limited hand and leg movement. But he could hear and had eye contact and was able to communicate. I couldn't really understand fully what kind of disability he would develop. I asked 'Will my son walk?' The doctor said the goal of therapy is to maintain what he has and to get the most out of what he has. For me, the word 'maintain' stuck in my mind and as I look back I see how this word helped me to balance between reality and ideals.
That word 'maintain' gave me the sense of a process, that it's not the goal of being able to walk like an able-bodied person or being cured, that there wouldn't be a drastic change. 'Maintain' doesn't imply an ideal that a child has to reach. That's why I liked your article 'The Enough House.' For some kids, enough is enough. It was a very simple message of 'don't lose what he has and then help him to grow'. I was allowed to see him as an individual and focus on him and what kind of possibilities he's blessed with and we were yet to find.
BLOOM: Did you then go to rehab services?
Kyoko: Yes, we went to a rehab service for a year before we moved to Canada. My son received occupational therapy and physical therapy for 1 1/2 hours each week and it was conducted in a big room where I could sit and chat with other parents and that was comforting to me. One of the parents recommended that I take my son to see an energy therapist and he helped my son tremendously in terms of speech. But we really just went to rehab for therapy. There was no cafeteria, no playground, no Ronald McDonald playroom. No mental support, or support for siblings.
BLOOM: In Marilyn's research, parents said they wished they'd been given more information about what to expect. Was this an issue?
Kyoko: I wish we'd had more information about spasticity. He was able to stand up against the wall with both feet flat on the floor when he was 18 to 24 months and we were waiting for the moment when he'd take the first step, but he never did. There was a lot of frustration about why he tends to fall or why he can't do this or that. I guess even though the doctor said the goal is to maintain, somewhere in my mind I was anticipating the next step and wouldn't it be nice if he can walk.
It's interesting, but it just came out of my mind that it seems like there are two pieces of me: One is accepting and another one is thinking 'maybe.' Because we were never clearly given a prognosis, a part of me was thinking that maybe something will change. I wish we'd understood more about spasticity and how it affects his overall movement. We were never told that it was something that wouldn't dissipate. We were going through rigorous therapy and exercise and stretching in the hopes it would help, but this is the mystery of spasticity.
BLOOM: You then came to Canada and your kids were in our Play and Learn nursery and then our integrated kindergarten. When you think about new parents or preemies transitioning to Holland Bloorview, is there any information we don't currently provide that would be helpful?
Kyoko: I think it would be helpful for the parents to be given a list of every therapy that is available, not just here, but private PT and OT and speech providers in the community. Because of the wait to get services, and because therapy is three months on and three months off, it would be good to know what other services are available.
BLOOM: What about connections with other parents?
Kyoko: I was lucky that in Japan a mother helped me tremendously and then when we moved to Canada, a mom in our neighbourhood whose daughter had CP also helped me. Then, much later, when my son was graduating from the Bloorview school, the physiotherapist suggested I speak with Dawn Lunan, who was a parent liaison at the hospital, and that was helpful.
I'm not sure what's most helpful for people. Whether you bring a group of parents together to talk, or whether you have a parent reach out to them individually one on one. I go to the Parent Talk group for cerebral palsy. In February we spoke about how in the autism group there's a very strong network. But for some reason, the parent support is still very weak in the CP group. There were only five parents at the session. I wondered why more new parents weren't coming out to these sessions.
BLOOM: I think sometimes parents early on are overwhelmed.
Kyoko: Yes, I understand that feeling of 'you want more information' and 'you don't want more information.' For me, I like to meet with other people who are going through different stages of life. It helps prepare me for what to expect with my son.
BLOOM: Is there something you feel we could do better at Holland Bloorview?
Kyoko: Holland Bloorview already offers many workshops and presentations on diverse topics related to childhood disabilities.
Family support I think can be done better. For example, for the siblings. We're all supportive and trying our best, but to be included in the care is the key. I brought the older kids to the swimming classes downstairs so they could get familiar with therapy and disability in general. I think it would be nice to have more activities for families where you can bring all of your children.
BLOOM: What about respite?
Kyoko: We didn't think about having respite early on. We were very close to each other. We preferred to go out and do something as a family.
BLOOM: How is your son doing now?
Kyoko: In some areas we've been very successful in bringing him up to the surface and he's become truly him: funny, creative, compassionate, a good human being with limited physical abilities. He is able to type his school assignments and play video games with a regular controller. He uses a manual and power wheelchair and is in a regular school program.
BLOOM: What advice would you give other parents?
Kyoko: Look at your child and accept him or her as he or she is, and bring up all of their potential by using therapy and social connections. And even if your child doesn't achieve all of these things, still, she is she and he is he, and there are moments of joy.