Tuesday, July 12, 2016
How wrong were the doctors about your child?
"We were told that my son would never sit upright. Now he walks, is really smart & sociable," read the tweet. It was in response to the video I put up about Max learning to tap dance.
I knew just what she meant. We called the pediatric neurologist and neonatologist at the hospital where Max was born Dr. Doom and Dr. Gloom. They only told us the worst about Max: That he might never walk or talk, and that he could have intellectual disability and hearing and vision problems. At one point, the neurologist told us we could sign a Do Not Resuscitate.
I've said it so many times: If only those NICU doctors could see Max now.
Technically, they weren't wrong about some stuff. He got cerebral palsy. He has intellectual disability. He doesn't talk the way a lot of people do.
But mostly, they were wrong.
Wrong, ethically, because they didn't give us a shred of hope. There was a young resident who talked to us about the plasticity of the brain—how new growth could spring up around the damage. He was our only consolation.
And those doctors were wrong because Max did go on to walk—on his own timeline, at age three. And Max can articulate words. And his vision and hearing are fine. And he has plenty of brightness and smarts, especially EI (Emotional Intelligence).
Not long ago, I read a letter that a mom of a little girl with Down syndrome wrote to the prenatal specialist who'd suggested that she abort her. As Courtney Baker posted on the Parker Myles Facebook page,
I'm not angry. I'm not bitter. I'm really just sad. I'm sad the tiny beating hearts you see every day don't fill you with perpetual awe.... I'm sad you were so very wrong to say a baby with Down syndrome would decrease our quality of life. And I'm heartbroken you might have said that to a mommy even today. But I'm mostly sad you'll never have the privilege of knowing my daughter, Emersyn... She's given us a purpose and a joy that is impossible to express. She's given us bigger smiles, more laughter and sweeter kisses than we've ever known. She's opened our eyes to true beauty and pure love.
Those NICU doctors were wrong in one other key way: They were wrong not to tell us that we would adore and love Max, no matter what. That he would bring us so much happiness and pride. That even if he wasn't the child we'd dreamed of, he would be a great boy we could have never imagined.
Oh, yes, those NICU doctors were wrong.
Luke's initial diagnosis (at 31-months after adoption at 27-months) was severe mental retardation with autistic behaviors. This was by a very reputable doctor who has worked with many children in a foreign adoption clinic. It is what she saw at the time. She also emphasized the importance of early intervention and for me to get involved in a support group. Regardless of his diagnosis, these two things were vital. She was never "down" about the life that Luke would lead or how it would effect our family. It was more of "this is what I am seeing". 12+ years later I am happy to report he only has autism. He is still non-verbal. Still has developmental delays. But is very smart. No cognitive issues!ReplyDelete
Yeah, Luke! It is wonderful that the doctor was looking out for both of you.Delete
Doctors are pragmatists with a secondary specialty in emotions.ReplyDelete
Yes, it's their job to be pragmatic. I only wish the two main docs had offered us some rays of hope.Delete
I'd rather they give no hope than false hope.Delete
I am not sure if this was a doctor or an Early Intervention evaluator but either way I once found an old report suggesting I was "mentally retarded". I am not. I had developmental delays but I have a perfectly average IQ (with one really high sub score) and I have excelled in college level classes in high school and I will be attending college.ReplyDelete
I may not know you in real life, Kathryn, but I can tell that you are wise beyond your years.Delete
It's great the doctors were wrong about Max, but it's their job to make you aware of the worst possible outcome.ReplyDelete
Because you're one anecdote. It's wonderful Max beat the odds and defied expectations. That's not the case for everyone, as I'm sure you know.
I definitely think there should be counsellors in hospitals to discuss potential outcomes (e.g. someone to tell you Max *could* learn to walk, to speak to you about brain plasticity, etc.) This way, you'd be aware of the success stories — and the stories that don't turn out so well.
These counsellors could help with the emotional side of things, like how much you'll love your child and the joy he'll bring you. They could also talk about the hardships from a less clinical perspective (e.g. how watching Max develop on his own timeline would make you appreciate his abilities that much more).
I know doctors have to tell the worst possible outcome. And yes, it would have been wonderful if counselors were there to share some success stories/give us emotional support. But I don't see why some of that couldn't have come from the doctors themselves. They are the experts you are reliant on, especially when your child is in the NICU. We clung to their every word. And because their every word was negative, it was devastating to us. We were new parents. Our baby had a significant stroke. Why couldn't the pediatric neurologist have brought up brain plasticity when he sat there and sketched a drawing of all the parts of Max's brain that were damaged by the stroke? That, I'll never understand, or forget.Delete
We were told my son would probably end up in an institution. The neurologist's office was named Associates in Neurology and I wrote on every check to them "Ass in Neurology". Basically they couldn't even diagnose him and thankfully we found a doctor who could, I'm not bitter either but I sometimes still panic at the what ifs, and struggle big time with trusting every new doctor we add to the mix.ReplyDelete
Whoa, Stephanie. I never knew that. We were stuck with the NICU docs we had but as soon as we were out, we went to the most kind-hearted, caring and brilliant pediatric neurologist—the antidote we needed. We've been with him every since. He is straight up about Max, but he's given us plenty of hope and encouragement over the years. I laughed out loud at Ass in Neurology. Brilliant.Delete
As for the prenatal specialist who pushed for a foetus with Down Syndrome to be aborted:ReplyDelete
It's the specialist's job to inform their patients and that includes providing the option to terminate. That said, I think the specialist was wrong to push for an abortion. Especially if the mother made clear she didn't want to terminate.
If the other prenatal specialist truly told their patient the foetus was "perfect" during ultrasounds, then they weren't doing their job properly. Down Syndrome can come with serious heart and lung complications.
IMHO neither specialist is better than the other.
I'm a midwife. I deal with women who receive a high risk diagnosis for Down Syndrome. Yes I talk with them about the options and possible complications, but I also talk about the joy children with Down Syndrome can bring. Every parent deserves both sides of the story. Yes, babies with Down Syndrome are at higher risk of heart issues- but boys are at higher risk of autism. The scan will tell them whether the baby has heart issues so it's my job to give a frank outlook on the unknowns- the bad AND the goodDelete
Yes, definitely, the specialist was wrong to push for an abortion. And Anon midwife, props to you for sharing the good along with the negative possibilities.Delete
Doctors often forget they don't deal with bodies, but with human beings. They also seem to enjoy the power they can exercize on patients given the latter's particular vulnerabilityReplyDelete
I don't know about the second part of what you say—that sounds pretty extreme—but I do feel that Dr. Doom and Dr. Gloom were not at all considerate of our emotional state.Delete
I suppose so but there are good ones out there.Delete
I wrote this in May when Marley graduated from kindergarten.
That just made me cry. So powerfully said. Especially these words to the doctor: "For everything you know about medicine and all the tools you have to fight disease you have forgotten that the most powerful tool of alI is hope." Congratulations on Marley's graduation, she is a beautiful girl.Delete
Our neurologist has been Gabe's neurologist since he was three days old. When he told us that Gabe had sustained a Global Brain Injury, he explained that Gabe could land somewhere on a spectrum of disability - anywhere from a limp when walking to nonverbal and immobile. The truth is that Gabe is on the far/severe end of that spectrum physically, despite therapy and medicine and exercises. I'm writing this for anyone else whose family has experienced the opposite of what Ellen's family experienced. There is still so much joy and hope. Gabe has exceeded anything I imagined when it comes to relationship and love. He radiates joy. He is happy. The physical limitations are things to grieve, and we grieve that our "please let it just be a limp" hope is gone, but there are other milestones doctors don't measure. Don't feel alone out there, Momma or Daddy! I rejoice for outcomes like Max's! But joy exists without that kind of success.ReplyDelete
Thanks so much for sharing, Ellen. Max is paving a way for so many kids. I love the way you help him kick down society's doors. Solidarity, Momma Bear Ellen.
Amen to all this, Becki. Especially "there are other milestones doctors don't measure." And MOST OF ALL: "Gabe has exceeded anything I imagined when it comes to relationship and love."Delete
I'm coming at this from a different perspective, as I am a young adult with CP. I wasn't diagnosed until age 2, and my prognosis wasn't as terrifying as it could have been (though I imagine the ordeal was still frightening for my parents). The doctors said that the damage looked bad, but that I was doing well. The prognosis was that I wouldn't be able to hop on my affected foot. It took an orthopedic procedure to defy the prognosis, and it didn't happen until I was 10, but the doctors were wrong. Today, I am a recent college graduate, and virtually no one I meet knows I have a physical disability unless I tell them. It's amazing to read all of these prognosis stories because it illuminates that professionals don't always know best.ReplyDelete
Also, I know that not every child will exceed the expectations of the prognosis they were given, but what matters is that each child lives a full, happy life and feels comfortable with his or her body.
I came around to that, Anon, after the early years of grieving what happened to Max. I like that you say "full" because people used to say "As long as he's happy!" but I also hope that he gets to experience a whole lot of life.Delete
As a pediatrician who has worked in NICUs, I appreciate you writing about Max's journey. I have been reading your blog for many years and continue to learn. Ideally a doctor would discuss both positive and negative outcomes. I feel that it is important to discuss the possibility of developmental outcomes - it sounds like the doctors said he may not walk, not that he would never walk. I don't want to diminish your experience of their negativity but sometimes people focus on only the good or only the bad news of the meetings. If only one doctor spoke about hope for Max's future, that is a shame but I am glad you had one person there giving you hope. I had a wonderful mentor in the NICU when I was a resident- he'd had a patient in the NICU with a terrible MRI, with holes throughout her brain. The family came to visit each year and brought pictures of her little girl and news of her accomplishments. He told us that she could walk and was learning to read and write, skills that would never be predicted by looking at her MRI. When we had babies who had possibly bad outcomes, he would point to her smiling picture and remind us to give hope.ReplyDelete
Thank you for this, and for reading the blog. I love that the the family returned to that doctor. I'd thought about doing that with the neurologist, then he passed away a few years ago. Yes, he and Dr. Gloom were always negative, except for the one time toward the end of Max's stay when I had a meltdown and told the social worker that I refused to see the pediatric neurologist again unless he had something positive to say, at which point he did discuss brain plasticity. And yes, we were grateful for the resident who shared some positives—not false ones, just positives. Marley's mom above, in her Facebook post, also wrote: "Hope is not only everything sometimes its the only thing." Thank you for giving parents hope.Delete