WBW-Robo Baby – Parenting a child with congenital defects

Welcome to Way Back Wednesday! Our new weekly feature, looking back on the more interesting learning moments in pregnancy, parenting and birth.

When my son was born, everything changed. Parenting a child with special medical needs is different. It was so different from my experience with his sister. I had to learn to process the joy of his arrival while grieving the loss of a carefree existence. We didn’t have much time to prepare. When we got the diagnosis (to simplify, three holes in his heart and 5000 irregular heartbeats per day) it was all on the job learning for me. He was still my baby, and I still had a lot of smiling to do. That’s how we met robo baby.

Events that would previously have seemed tragic to me became fun. We called his holter monitor “the hugging robot”, to make it a little less scary for his big sister, and later my son himself. We chuckled at the hilarious mesh vests the hospital put him in, and lovingly nicknamed our wired-up son “Robo Baby”.

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I also recall “attacked by an octopus” jokes when we’d remove the monitor tape.

Our ways of handling procedures changed over time. He had his first echocardiogram at one week old, and his last at three years. None of them were done under sedation. He simply wasn’t sick enough to justify the risks. It’s hard, putting your tiny newborn down on a table. Knowing you can’t pick them back up for an hour, while a stranger firmly presses a probe over their tiny chest, and there’s nothing you can do to help them understand. We played soft music for him. I kept oral syringes of sugar water on hand, which helped tremendously with soothing. In some cases, you can lean over the table to nurse, or hold a bottle. And I’d talk to him. More often than not, when he’d cry on the table, he just wanted to know I was there. So I’d talk. Talk about the weather, about what I’m planning for dinner that night. Anything. Just talk.

Walking a toddler through it was a whole different ball game. He was frightened. He’s a skinny little guy, and the firm pressure of the echo rolling over his breastplate hurt. How can you keep a child still and flat when they’re terrified? I became a one woman exam table. I’d lay flat, and hold him close on top of me. I’d direct his attention to the cartoons playing nearby. And again, I would talk. I won’t lie, it felt terrible. I have all the understanding in the world for parents who choose to step outside when their child undergoes an unpleasant test or procedure. Restraining your crying child effects a parent in ways that are difficult to put into words.

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You want your baby to grow up like anyone else, free of fear and limitations. For the most part, I think I achieved that goal. Everything, however, was modified just that tiny bit. Where I tried hard to get his sister to sleep in her crib through the night, I held him closer at night. I wanted to be close enough to hear him breathing. I wanted to see him at all times. I wore him more. I watched him more. Weaning wasn’t on my agenda. I kept thinking nursing him must be helping in some unidentifiable way. I dropped everything we were doing and announced it was time to head home, not wanting to frighten the children with the truth, that we were leaving the playground because my son was turning blue.

We did our best to explain. The hugging robot comes to visit. It hugs the baby for a whole day and night, and then goes back to the doctor’s office to tell them what it learned. I told my daughter that everyone is born with something a little different. She has a birthmark, and a lip tie. Her baby brother has holes in his heart. I always framed it as part of the amazing variation of the human body, and both children accepted that. It was just something that made him very special.

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The holes in his heart were set to be closed by a catheter procedure. Snaking up his femoral artery, from his groin to his heart, and plugging the holes. In an amazing stroke of luck, the pre-op echocardiogram and holter changed everything. At three years old, we found his irregular heartbeats had dropped off from 5000 per day, to 3. Three, tiny, individual, off rhythm beats. All three holes in his heart had healed spontaneously. We went in anticipating surgery, and instead we were discharged from the practice. “He’s not a cardiology patient anymore. He’s too healthy.”

It’s hard, getting out of that mindset. When your baby is born different your entire identity changes. I still don’t think it’s sunk in for me. I still find myself watching him just a little more closely. Pausing, not knowing what to say when the dentist’s office asks about heart conditions. Being a little more patient, a little more mindful than I was before I learned my children aren’t bullet proof.

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I think about my mother. I think about how I arrived with my own congenital defects. How she sent off her toddler for surgery. Once, twice, three times. How we were separated. How she must have felt leaving her baby alone in the hospital. How many months, years, passed with her unable to hold me, while I was in full body casts and traction. I never felt unloved. I never questioned why she handed me off for tests and procedures. I don’t remember the pain, but I do remember the love. I remember the Cast Fairy. The friend my mother invented for me, who would leave gifts at my bedside for when I awoke from anesthesia. I don’t remember the fear, awaking from surgery, but I do remember the joy of finding a tiny silver ballerina charm necklace at my bedside. It gives me hope. That someday my son will look back at his earliest memories and not remember the pain, the fear, the limitations. I hope he remembers the hugging robot, and his days as RoboBaby.

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