Tuesday, February 18, 2014

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.


Would love to see this shared with other rehab professionals! I think Lizna would have the credibility as an OT that us 'regular' moms would not.

Love the 'listening' lesson - that was brilliant. AND the recognition that many rehabs are not funded and parents have to pay privately (that's the case in Alberta too). AND the extra inequity for families who struggle with advocating - that's an important point. AND the value of peer support. Yes, yes and yes!

Great article! Lucas is certainly a lucky boy in that he has a great team of advocates and supports surrounding him. Supports for the family and the parents are all too often the piece that is missing. Patients can "fall through the cracks" as can families in that so many of these supports have strict income or other rigid criterea. Other families are all too often the best resource when the information should really be coming from the health care providers themselves.

Thank you, Lizna. I have had similar experiences with services regarding my own son, Lucas, and his treatments. I have said so many times all the things you say - what do others do who aren't as aware as I am or who have other barriers I don't have? It's great to feel I'm not alone, but horrible to know that other people have also had these bad experiences which seem inexcusable this day in age with all the supports and technology we have in place. Maybe we can change awareness. I hope so. Thank you for sharing your story and I'm so happy to hear that your son is doing so well thanks to your initiative.

Thanks for this eye-opening piece. I live in the northern US and had one child on my caseload with Sturge-Weber. They have since moved away but I wonder what happened. I think of them often.