A dad's view of the NICU

By Louise Kinross

Bob Moran is a political cartoonist for The Telegraph newspaper in Britain. In 2015, he illustrated a heartfelt memoir about his daughter Poppy, who suffered a brain injury during birth. Father’s Days contrasts how he imagined his new role as dad with the terror of seeing his critically ill newborn hooked up to machines. It’s been viewed millions of times around the world and is used to train clinicians in neonatal intensive care units. This year on Father’s Day, Bob released a sequel about his family’s first trip abroad: Father’s Days at Sea. His daughter Poppy is now four. “She’s happy, she’s cheeky, she’s determined,” he says in the second video. “She also has cerebral palsy and epilepsy.” BLOOM spoke with Bob about the process of illustrating his life parenting a child with a disability.

BLOOM: When did you start drawing the story of Poppy’s birth?

Bob Moran: The idea came about when she was two. A newspaper colleague suggested I create a long-form piece done in cartoons that would be something autobiographical. It would take a difficult subject and do it in cartoon form to make it more accessible and easier to talk about. I said the only thing that would be suitable is the birth of my daughter. But to begin with, I really didn’t want to do it.

BLOOM: What were your concerns?

Bob Moran: I didn’t feel comfortable about sharing something so personal and I was aware that I hadn’t dealt with a lot of it myself. I was nervous about confronting the memory head on like that. Another thing that worried me was the awareness that families who’ve been through this all have a slightly different story, and their children have different diagnoses and levels of ability, and I was aware that it had to be sensitive to all of that. Ultimately, I realized that the emotional journey everyone in this situation shares is similar.

BLOOM: The video is so moving because it’s so candid. You contrast how you imagine fatherhood will be with the shock and helplessness of learning your daughter is fighting for her life.

Bob Moran: Not many people had heard that story from a dad’s point of view before. A lot of the correspondence I got was from other dads saying it really helped. You shouldn’t generalize, but I think men tend to find it harder to face up to the emotions of things like this, and there’s that sense as a dad that you’re supposed to be strong and hold it all together. That struck a chord with dads and enabled them to start talking about the fact that they felt the same way I did. They felt quite helpless.

BLOOM: What was the process of creating the illustrations?

Bob Moran: Recreating it in so much detail was like a form of therapy for me. The first thing I did was look at all the photographs we had taken. We’d taken a lot of photos when she was born and then during the two weeks we spent in intensive care. I had deliberately not gone back to look at those. I had to look at them for reference, but also to help trigger my memories of how I was feeling. That, in itself, was very difficult.

It made me start to realize there were a lot of feelings I hadn’t processed. I had to work out a way of telling the story that dealt seriously with the emotions, but with a visual style that was gentle and accessible. I had to create myself as this central character that was slightly clueless and awkward.

BLOOM: Because you’re so honest, there’s so much humour in the story. I love the part where the nurse is basically ordering you out of your wife's room because you can’t cope.

Bob Moran: For a long time it was sillier. It went through lots and lots of versions. I worked on the whole thing for about eight months. I think in total I did over 200 drawings for it. For a long time there was more of that silly, outlandish humour. Then we figured we needed to strike a balance with that to hit the right emotional note, so we came back to sensitivity. We didn’t want to make it too silly.

BLOOM: Did you have dedicated time to work on this project?

Bob Moran: It was in addition to my regular political cartoons. It was a good change because it was a complete change of head space and subject matter. To be working on something completely personal and apolitical was refreshing.

BLOOM: But you were doing it on top of regular work?

Bob Moran: It did get stressful at points. More for my wife, Sally, because I don’t think either of us realized how long it would take. As the video explains, we were so busy with Poppy and our days were filled with hospital appointments and therapy. So in a way trying to create this project was very difficult to balance with being a dad and looking after her.

BLOOM: What is it about illustrations that enable you to convey emotion and ambiguity in a way that words or photos don’t?

Bob Moran: That’s right. You could tell the same story using photographs of all of those frames and it wouldn’t work in the same way at all. If you’re illustrating, you have total control. You decide what to leave out, which is as important as what to put in, and you can make things more ambiguous. You can amplify bits of emotion or focus on certain things. And you can add in certain bits, like the superhero bit. There’s something subconscious going on for the viewer who knows these are drawings that someone sat down and did, and that makes them feel more comfortable. They’re not looking at something real, and yet it’s making them think about something very real. They feel they can immerse themselves, but in a comfortable way.

There were certain moments where I didn’t want to make it explicit in terms of what was going on. For example, I didn’t want any words with the frame where I’m in the hospital and going to see Sally, and she’s crying in bed. It’s enough that you see the picture.

BLOOM: I think that also makes it relatable to people who have been in similar situations. As a parent, I can see myself in that image. What did you learn about yourself through the creative process?

Bob Moran: It helped in lots of different ways. It threw everything into perspective. It enabled me to really get my head around how far we’d come since those early days of her birth, and how well she was doing relatively, when compared with what we expected at the beginning.

Personally, it gave me an understanding of how guilty I had been feeling about the whole thing. I think this is true of a lot of parents who go through this. Part of you always feels like it’s your fault, or you could have done something to stop it. I think telling the story again in my own way—it didn’t make the guilt go away—but it helped me to accept that maybe it’s a natural feeling, and I shouldn’t let it worry me.

BLOOM: I also think that when you have to tell the story over and over, it sinks in that you really couldn’t have done anything.

Bob Moran: When I started thinking about how am I going to tell this to someone who doesn’t know me or about me, how do I make this relatable and understandable, I ended up telling the story back to myself, as if for the first time. And you start to realize, you know, that there wasn’t really anything I could do and maybe I did cope as well as anyone else would. I’ve always dealt with things by drawing them, ever since I was a child.

BLOOM: There’s one brilliant line where you say 'I just didn’t think I was strong enough,' with an image of you lying prone on the floor at home, after leaving the hospital. My son is an adult now, and I still feel like I’m not strong enough. Somehow, having a child with disabilities seems to show up all of my inadequacies.

Bob Moran: There are two aspects to that line. A lot of people will say to me ‘Yea, what parent ever does know what they’re doing?’ and that makes it relatable to everybody. At the same time, it means something very different to parents with a child with a disability or additional needs. It literally means you don’t feel like you have the inner strength to be able to do what the child needs, or what you want to be able to do for them—which, ultimately, is to take it all away.

BLOOM: Yes. I think that’s it. I always wish I could be better than I am. Or maybe I wish I didn’t have such wild, conflicting emotions about it.

Bob Moran: Before Poppy was born I felt like I had a rough idea of what I needed to be able to look after a baby. I felt I was equipped to do the pretty simple things—to give a home to live in and love them and be ready to take care of and teach them things. Then suddenly, it was like because I’m not a neonatologist, I’m not up to this. I can’t look after my daughter. I do pictures for a living. You’ve suddenly got these people who’ve spent 10 years in medical training saving her life, and it makes you feel so totally inadequate. It’s silly in a way, because you’re there, but you still feel like it should be you somehow.

BLOOM: You talk at the end of the piece about how Poppy, and the many health professionals in her life, are the real heroes. Did you feel happy with the medical care you received?

Bob Moran: That’s a bit complicated. Once she was transferred to the NICU, which is where the video begins, she received care that was out of this world. But everything that happened in the lead up to her being born and my wife being in labour was horrendous and really bad. Essentially, Poppy should never have had the brain injury. Sally was two weeks overdue and when we went to the hospital saying something is wrong, they wouldn’t let us see a doctor. So we’ve experienced both extremes of the health care system: the worst and the best.

BLOOM: What about the rehab services Poppy has received since?

Bob Moran: Overall we found it a bit of a mixed bag. Quite a lot of the therapy that she’s received we’ve had to seek out and pay for ourselves. What you get on our health service here is very basic. Last year she had one physio session that was covered.

BLOOM: One?

Bob Moran: We had to end up paying for private physio for her. The communication from the system to us has been very difficult, very bad at times. Certain things that we knew she needed we had to really keep fighting for and pressing for.

The system is disorganized and doesn’t make sense in a lot of ways. For example, she needs a Lycra suit that she wears to support her core muscles when standing and walking. So they measured her for the suit, then we had to wait six months for it to arrive. By the time it arrived, she’d grown out of it. It’s really ridiculous.

The one thing I thought at the time she was born was at least we live in a country where she’ll have everything provided for her, and the equipment and therapy she needs. But it hasn’t quite worked out like that. It’s really disappointing. I don’t think it’s to do with a lack of funds. I think the system is really disorganized.

BLOOM: Britain seems to be a difficult place to live as a person with a disability at the moment, with all of the cutbacks to home-care supports. There's also a perception that people with disabilities are 'working' the system.

Bob Moran: I think it is hard in this country. It’s a question of balance. There are things we’re willing to spend millions of pounds on that are totally not needed. Yet we’re not willing to make sure that disabled people have everything they need. Poppy has needed a wheelchair for over a year now and we just last week found out she can have one, we hope, in two to three weeks. Poppy can walk independently, but she’s really unstable, so she falls over all the time. She also tires quickly and can’t walk a great distance. Originally, when we were told it takes a year to get a wheelchair, we said how is that even possible? Why aren’t we doing something about this?

BLOOM: Has Father's Days been used to educate medical students?

Bob Moran: It’s been used to train doctors and nurses in Britain who are going to work on neonatal wards. Quite soon after the video came out, I had a lot of neonatal doctors get in touch with me to ask if it would be okay to show it to their staff. It’s been shown at conferences all over the world, and translated into four or five languages.

BLOOM: Wow. That’s amazing. Can you tell us a bit about Poppy now, at age four? What does she enjoy doing?

Bob Moran: The latest thing is horse riding. Lots of people said it would be really good for her hips and her core strength, so we found a nice little stable near our home and we’ve been taking her every week. She loves being around the horses and touching them and the smell of them. It calms her down and makes her feel at ease. It’s really making a difference physically as she’s getting stronger and has better balance. She has a little riding hat—it’s the smallest size they make, and it’s still massive.

She loves drawing as well. She likes to get the paint and splash it around on the paper. She likes to come up to my studio and see what I’m working on. When I’m painting, I have sheets of paper where I mix the paint up next to my drawing board, so it’s a mess of colour. She always says she prefers that to the picture I’m working on.

BLOOM: That's funny. How does she get along with her little brother?

Bob Moran: They have a good relationship. They’re very similar in development, because Poppy was so delayed with speech and movement and Dillon has ended up being quite ahead because of the work we’re doing with Poppy. He’s listened to all of the speech therapy. Some people think they’re twins because they’re so similar.

BLOOM: How would you describe your new video called Father’s Days at Sea?

Bob Moran: It’s a sequel, a way of showing where we are now as a family and, in a way, how far we’ve come. It’s more lighthearted than the first video, and doesn’t have the same emotional punch. What was important for me was we were genuinely quite scared about going on holiday. I hoped that other families would watch it, and feel like maybe they can go on holidays, too. It won’t be perfect, but perhaps it will be okay.

BLOOM: Do you plan on doing more videos in the series?

Bob Moran: It depends on if the newspaper wants more. I do have some other projects on the same theme that are more fictional.

BLOOM: Writing about parenting a child with a disability?

Bob Moran: Yes. Writing the first video made me reflect on where I wanted my career to go, and how I wanted to use my talents I guess. I found it so much more rewarding than just drawing politicians in a very cynical way. Doing this actually affects people in a real way, and I need to do more of this. What I’ve done so far has reached a lot of adults and maybe helped parents in similar situations. Maybe people who didn’t know anything about this world have gained a different perspective on it. What would be even better is if I could do the same kind of thing in a way that worked for children.

BLOOM: Like as a children’s book.

Bob Moran: A book that everyone could have in school that would help them talk about disability and not be afraid to ask questions. That would help children understand what a disabled child had gone through and what their strengths are.

BLOOM: What do you hope people take away from your videos?

Bob Moran: Overall, I hope people feel uplifted generally and reassured that however useless you feel as a parent, you’re doing okay. There’s no right or wrong way. As long as you love your children, you’re doing a good job. Don’t beat yourself up is one of the main messages I’d like to get across. Don‘t be hard on yourself. If you’re in this situation, everyone is doing their best, and no one can do everything.

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'Getting a diagnosis has changed our world'

By Keith McArthur

Laura took a deep breath and mustered up the courage to call the neurology clinic.

Families of sick children were supposed to wait patiently. The clinic nurse had made this clear eight weeks earlier when Laura first called to check up on our son Bryson’s lab results.

But parents quickly learn that it pays to be pushy. And what was supposed to be a four-month wait had stretched to half a year of waiting to find out if Bryson had tested positive for a degenerative disease that would prevent him from reaching adulthood. So Laura ignored the ‘don’t call us; we’ll call you’ directive and dialed again.

“The results still aren’t back,” the nurse said. “We’ll call you when they are.”

When Laura pressed, the nurse reluctantly agreed to check on the file. A few minutes later, the nurse returned to the phone to sheepishly acknowledge that an error had been made. Bryson’s blood was never sent to the US lab for testing.

The reality of this—another four months of waiting—hit Laura hard. She hung up the phone and wept.

Four months later, the results finally came back. They were negative.

For nearly a decade, Bryson has endured countless tests to try to uncover a diagnosis: A muscle biopsy. Multiple MRIs and EEGs. Dozens of blood and genetics tests. One by one, we crossed potential diagnoses off the list as every test came back negative.

But a few days ago our world changed. Through a full sequencing of Bryson’s DNA, we have a diagnosis. Bryson has an extremely rare genetic disorder known as GRIN1, named for the gene that is misspelled.

It’s so rare that our doctors don’t really know much about it. And there’s very little on the Internet about it. But through social media, we’ve already connected with families in the United States and Europe who have children with this diagnosis.

While details vary from person to person, the common symptoms include moderate to severe intellectual disability and low muscle tone. Many kids also have seizures. Interestingly, several of these children find joy watching sports.

And the good news: the disease isn’t degenerative. GRIN1 kids progress and develop in physical and mental ability at their own pace.

Our kind and brilliant genetics doctor, Ronald Cohn, confided he’s been surprised over the years at how happy families are to receive a diagnosis—even when it doesn’t change treatment.

And indeed, getting a diagnosis has changed our world.

Laura has always felt like maybe the pregnancy was her fault—that she did something wrong when Bryson was in her belly. The pressure on expectant mothers to be perfect is immense. Now she can finally let go of this toxic guilt.

And for me? I understand now that Bryson’s little body is doing exactly what it’s supposed to be doing given his own genetic code. He is perfect. Yes, one of his genes is coded differently, but the vast majority—some 20,000—are copies of mine and Laura’s.

Not only that, but we now have the knowledge that in the future, there could possibly be new treatments—medicines or gene therapies—that could help Bryson to progress more quickly.

The biggest change, however, is that our family is finally part of a community. It’s a small community; we know of just eight other people with the disease. But we are no longer alone.

Bryson will never be alone.

We found these families through a blog post a GRIN1 mom had written.

So I want to speak directly to any families who might find this post after receiving their own diagnosis:

First, congratulations and welcome to our community. Please reach out so we can learn more about GRIN1 together. Meantime, I’ve included some links below where you can read more about Bryson and other kids with GRIN1.

This post initially appeared on Keith McArthur's blog.

Bryson
Baseball and Belonging
My Father’s Day Pledge

Hunter
Penguins games therapeutic for Carnegie toddler with rare gene mutation

Aislinn
Aislinn’s Treasures: Just Grin

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Courage Project: 'Accept things as they are'

A father, who we’ll call Bruce, contacted us about sharing his story in our Courage Project series. To protect his child, we have changed some identifying details.

Bruce and his wife were shocked when their firstborn child, a son, was born blue, resuscitated and transferred to a different hospital.

A breathing issue was later diagnosed as a heart problem, then other life-threatening conditions emerged. During the first few weeks a doctor from genetics came by and, without explaining why, began measuring the boy’s eyes, ears and face. Later it was announced that their son was deaf and had global developmental delay.

“After he was born my wife said ’He’s not my child,’ and those words have resonated with me every day since,” Bruce says. “She just couldn’t accept a son who was different from a regular baby. I tried to convince her that it was workable, that she would accept him over time, but she never did.”

Bruce worked long hours and travelled often. He arranged for caregivers to support his wife almost 24 hours a day and, when he was home, did most of his son’s hands-on care.

When his son was eight, Bruce was diagnosed with cancer. After an operation he began to spend most days at home. “That’s when I first began to suspect something. My wife was out most of the time and often a caregiver was left looking after him. When my wife was home, I’d hear screaming. I’d run into the living room and she’d be holding a slipper up and ready to hit our son because he’d wet his pants or was not cooperating with her attempts to dress him. He had some deep bruises on his legs, but she said he’d fallen. She stopped putting his splints on because she said he didn’t like them. She was supposed to be going to my son’s school to volunteer for the day, and then I found out that she popped in and left right away. I later learned she’d found another boyfriend.”

When Bruce confronted his wife he says she threatened to kill him and their son. “I went to the police and they arrested her. It took a hell of a lot of courage to make that decision. I was crying in the police station thinking about how she had abandoned both of us. How was I going to cope alone with my son’s needs?”

Bruce retired from full-time work to spend more time with his son and “the two of us get along fantastic together.”

His son lives with him but has one overnight a week with his mother. “When my son comes home from school, I’m there, and I work with him. I’m amazed at the progress he’s made these last few years.”

Bruce says a number of things gave him courage during this period. “My son is my courage. In his 12 years he’s been through a lot more than I ever could imagine. All the operations, all the blood tests, all the conditions he’s trying to beat, the prodding and the probing. I get courage from him.”

When his son was first hospitalized as an infant, it was a cleaning lady on the hospital unit “who gave me courage,” he says. “We were two months into this new world and more issues had been found. ’Don’t worry,’ she said. ’I’ve seen people go through this before, and you’ll become accustomed to it as time goes on. You’re not alone.’ She told me to focus on one thing at a time, that I can’t face the whole problem at once.”

Bruce says it’s important for parents to work on acceptance. “You have to accept the fact that your child is who he is and love him for who he is and not for what you want him to be. You can’t keep looking for answers. Once you accept things as they are, you realize there’s a new path open to you. For example, after working with my son’s teachers at age 11, he no longer needed diapers. My son's hands may be twisted with arthritis, but he can hold a pen properly and  wrote his name for the first time at age 12. I have lots of examples of how  consistent hard work and good teacher-parent communications have made small, positive improvements in my son’s life.”

Bruce says a support system is also essential. He has two close friends that he can call on if he needs a short break from his son.

The other key support in Bruce’s life was a social worker he saw at a children’s rehab centre. “She listened to me, and she helped me get through it. It was important that it was someone who understood our situation of having a child with additional needs.”

Part of accepting his son’s special needs involves being grateful, he says. “Coming to Holland Bloorview and SickKids I’m often struck by how wonderful it is that my son doesn’t have more severe disabilities or illnesses.”

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