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No small miracle

A former Gazette reporter recounts the journey of his youngest son, born at only 27 weeks.

A former Gazette reporter recounts the journey of his youngest son, born at only 27 weeks.

Have you ever seen a one-pound baby before? Not on an ultrasound, but right before your eyes?

Have you watched your baby’s entire body quiver as a ventilator fires hundreds of tiny puffs of air a minute into their premature lungs? Choked back tears seeing your baby splayed out almost lifeless on a hospital bed, recovering from open-heart surgery? Spent 241 days trudging from home to the hospital and back before your child could finally come home?

A premature baby is a juxtaposition of hope and fear — miraculous and fragile, strong and helpless. For some families, a premature baby isn’t just a quick stay in the Neonatal Intensive Care Unit (NICU) before going home — it’s an agonizing marathon of trauma.

The birth

The worst hour of my entire life comes on Jan. 14, 2021, when nurses wheel my wife and unborn son away. I don't know if either will survive the coming birth.

My wife had been admitted to hospital when lab tests revealed her liver enzymes were climbing and platelets were dropping. The only treatment is delivering the baby, but our son is only 27 weeks along and at our last ultrasound weighed less than one pound. We’ve been told if he doesn’t surpass that one-pound or 450-gram mark, there’s nothing they can do except let us hold him until he dies.

It has been a difficult pregnancy, with blood-flow problems in the umbilical artery and our boy weighing half what he should. We’ve been going for weekly ultrasounds and have a doppler to check for his heartbeat three times a day. We even record it, just in case it’s all we have.

With Vanessa’s platelets dropping, the doctors decide she must deliver the baby or she might bleed to death during the Caesarean section (C-section). One final ultrasound provides some hope; his estimated weight is 525 grams, large enough that the neonatology team will try to keep him alive.

It’s an emergency C-section in which my wife will be put under, so I can’t be with her and am left panic-stricken and alone. I briefly leave her hospital room to retrieve an overnight bag and when I return, a woman in full surgical scrubs is waiting for me.

I’ll never forget her words.

“Your boy is here. He’s alive. He’s breathing on his own.”

More reassuring is that Vanessa is OK. I share the news with her when she returns, as she’s just woken up and we cry together in relief and fear. A neonatologist comes to tell us our son weighs 520 grams, and that while he’s breathing on his own, they’ve intubated him so he can use what energy he has to grow.

Two hours later I watch as a monstrous isolette, and myriad monitors and machines roll past me, and buried inside see-through burn-victim blankets, covered in wires and tubes and sporting a white tuque is my son, Benjamin Peter Anthony Boer.

I can barely make him out. Had I been able to pick him up, he would have fit in one hand with room to spare. His skin is so thin I can see the shadows of his organs and his bones jut from his joints like arrowheads. I stand helpless at his bedside, remembering the neonatologists’ words that the first 48 hours were critical to his survival.

The journey

Benjamin survives the first 48 hours with no issues, and his weight slowly starts to tick up. Four days after his birth, my wife and I hold him for the first time, taking turns pressing his skin against ours for kangaroo care that will help Benjamin regulate his heart rate, breathing and body temperature.

While initially the doctors believe he’ll be ready to go home by his due date in April, problems begin to emerge. He has laser eye surgery to stop the abnormal growth of blood vessels that could cause blindness. He has a hernia in his groin repaired. More worrying is a heart echo that reveals an open duct that closes in most newborns but hasn’t for him. There is also a hole in the middle of his heart and all the blood sloshing through these openings is making it difficult to get Benjamin off high-flow oxygen. He also has pulmonary hypertension.

In June, a surgical team clamps the duct closed and uses a small plug to close the hole in his heart. But when they place the plug in the hole, it falls into one of the chambers of his tiny heart. They are forced to crack open his chest, place him on bypass and close the hole surgically. Benjamin spends a week sedated on a ventilator. On Father’s Day, the pacing wires inserted in his chest activate when his heart rhythm becomes irregular. But slowly, he begins to recover. By August he moves from high-flow oxygen to low-flow oxygen.

On Sept. 10, 2021, 241 days after he was born, Benjamin finally comes home.

Today

Benjamin is now 22 months old. He is a happy, social, giggling little boy who loves fuzzy blankets and giving open-mouth kisses.

But there are concerns. He doesn’t know how to eat, so he has a feeding tube implanted in his stomach. We’ve been told it could be years until he can eat independently. After months of crawling and cruising, he has finally started walking.

Benjamin is also very delayed in communication. He seems to understand a fair bit but only makes a few different sounds and has a couple of gestures.

He sees a speech language pathologist, physiotherapist, occupational therapist and feeding specialist, as well as cardiologists and respirologists. He already has glasses. He’s been readmitted to hospital twice in the last month due to illnesses that have ravaged his weak lungs. We’ve been forced to pull him from daycare and pursue in-home care.

Our other boys seem no worse off for all the time we spent at the hospital instead of with them. But both Vanessa and I have spent time off work and in counselling as we work through the trauma of our son’s journey.

Our little Benny is here with us, for which we are forever grateful. But there is still a long way to go.

Peter Boer is a former St. Albert Gazette reporter and St. Albert resident. He is now an elementary teacher who lives in Stony Plain with his family.

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