My name’s Kate, and I’m the Parent Coordinator at Sunnybrook. I’m mom to two preemies, and I wrote this in response to an “interesting” article a friend forwarded to me. I hope other preemie parents can relate!
Every so often some helpful soul will forward me an article with a headline like, “Statistics say preemies likely to live short, solitary lives.” Something cheery and obviously worth sharing. When I read the article I invariably come on a sentence like this: “Researchers say the study, based on 35 infants born in Denmark in 1955, is not conclusive.” Big breath. Shake head. Try to stop feeling nauseated. Continue on with the day. Even now, six years after leaving the NICU, statistics have the power to shake me.
Numbers and stats are not friends of mine. Our baby was born at 25 weeks, and she weighed only 500 grams. She was the same size as but much less substantial than a brick of butter. Those are not numbers one would wish for. And yet she was always more than those numbers.
She had an incredibly rocky start, but we were amazed and awestruck by her determination to hold onto life. People often say life in the NICU is like a ride on a rollercoaster, and when I heard that I realized why I had always hated rollercoasters. Over time I came to see it though as more of a minefield that had to be tip-toed through with infinite patience and constant guidance. Our daughter had heart problems, digestive problems, blood problems and breathing problems, and she and her medical team surmounted these one by one. I had no language to describe her. She seemed to belong in the realm of the Old Testament or the like, where talk of miracles and divinity was appropriate, but those words weren’t familiar to me.
I turned into a researcher instead. I wanted to arm myself with as much information as I could because I thought it would help my husband and I learn how to be her parents. In a sense, I was thinking that statistics could predict her future. Yet when I went looking for stories like ours, for numbers like ours, I couldn’t find any. Babies were either bigger or smaller or earlier or later or had different complications. A week or two extra in the womb doesn’t seem like a big difference, but for a premature baby it’s immense, as is every gram of body weight and every week spent on a respirator and any one of a hundred factors that can turn a happy story sad or vice versa.
Any statistics I could find painted a terrible vision of what lay ahead, and I couldn’t match the numbers to our situation. In order to get through the daily challenge of life in the NICU, I needed hope, and the statistics gave me no consolation. Her nurses and doctors at Sunnybrook gently tried to guide me away from Google, my usual refuge. Slowly, very slowly, their message sank in. Would studies of 67 micro-preemies in Denmark help my husband or myself hold our daughter “kangaroo care” style for hours on end? Would a survey of American premature babies done from 1954 to 1976 show us how to read to her every morning and every night? Statistics can be very important for clinicians or researchers who are looking for patterns and evidence, but they didn’t help us understand our own baby. When only ten babies like our daughter are born in a year, what does that tell us? Who can we compare her to? What about five? How about none? What our medical team showed us to do instead was to pay attention to her, and to let her be our expert and our teacher.
I have a long, long list of reasons to be forever grateful to the people at Sunnybrook NICU, and one of those reasons is that they showed me only relevant knowledge is power. Those kind hearts who send me the articles are trying to help, I know, but they haven’t learned that lesson yet. And when someone is trying to help I find it very hard to say, “Stop – you are causing me pain.” But I wish they would stop. I wish all people everywhere would stop telling parents of preemies what they don’t need to know.
Here’s my message for any parents who find themselves in a situation like ours. Our baby, who statistically speaking probably shouldn’t even exist, is now six. She makes friends and has fun. She can read. She can write. She enjoys life. She is happy. While she may run into difficulties down the road, we know now where to go for support and assistance. We could never have imagined our present joy during those first difficult months, but we were lucky to be surrounded by people who told us the truth but also encouraged our hope.
So, parents of preemies or of any kid whose life got off to a rough start – please don’t let any person or any number steal your hope from you. While it’s important to be aware of the risks and complications that could lie ahead, it’s equally important to remember that there is also a chance, a wonderful chance, that your future will hold much joy. That’s what happened for us, and that’s why I’m more comfortable now with talk of the divine and not just numbers. We live every day in the presence of a miracle, not a statistic.
My name’s Kate, and I’m the Parent Coordinator at Sunnybrook. I’m mom to two preemies, and I wrote this in response to an “interesting” article a friend forwarded to me. I hope other preemie parents can relate!
Here’s my message for any parents who find themselves in a situation like ours. Our baby, who statistically speaking probably shouldn’t even exist, is now six. She makes friends and has fun. She can read. She can write. She enjoys life. She is happy. While she may run into difficulties down the road, we know now where to go for support and assistance. We could never have imagined our present joy during those first difficult months, but we were lucky to be surrounded by people who told us the truth but also encouraged our hope.
Beautifully said….I am the husband of Sunneybrook NICU nurse and have heard the stories often. The parents, family, doctors, and last but certainly not least the nurses deserve a unending round of applause because everyone had a part in your daughters survival.
I am very proud of my wife for her dedication to the little ones she cares for. She treats those babies as if she was trying to save her own.
We can believe in those miracles and the angels that watch over them.
I’ve said there are only two stats that mean anything to parents and patients: 0 and 100. Babies don’t 53% survive or 67% recover. They either survive (100%) or they don’t (0%)
Sometimes there are no stats, no evidence, no precidence. Sometimes there is only hope. You have demonstrated that beautifully.
Rob
Well written Kate. Thank you for writing this because statistics will never understand what parents of premature infants go through in the NICU
Sonia
Kate, I agree 100%.
Ian
It’s beautiful Kate. We are forever grateful to the people at Sunnybrook NICU also, and agree with you on the fact that there are no relevant statistics and it’s too bad, they are either obsolete or completely without a real base of research. Hope is what drives me too, and we should not let anybody take that away from us. As a parent I think you need to make informed decisions and trust your instincts and make sure when you’re ready that you’ll talk with other parents in similar situation because they can also help in ways that the medical teams cannot, like you did for us, Kate. You are a beacon of hope Kate!
Margaret
Your wife is obviously a wonderful person who has a lot to give. My daughter was at Woman’s College Hospital for the first 4 months of her life. She depended on the love and care of those NICU nurses as did her Dad and I. You have to be a strong type of person to do what they do. I thank God every day for those people.
Your perspective on stats is very well put – a doctor also said to us that he cannot tell us what will happen to the patient, but only in 100 patients how many of them will have certain results.
That really helped us stop clinging onto numbers and just let things be.
Mandy
So beautifully written – I guess we try to hold onto statistics and information to try to regain control over an uncontrollable situation and really we need to try to hope and love and make the best decisions given the information we do have at the time.
Mandy.
Amen!! Thanks Kate for the article. The # of times I was told by people to expect the worse, or even death, because the statistics for preemies are not good…blah…blah…blah… but hope and love is a powerful force. My son is almost 5 yrs old and has surpassed what all the statistics I have read said about his developmental “issues”. One of his NICU surgeons even said, “He survived…I can’t explain it.”
Cassandra
Love & Hope in the NICU
Kate! Loved your piece. Thanks for being that push of hope that I needed in my time of need! You are truly wonderful! Xoxo. Miss you ! Sabrina.