Opinion

The birth defect that never was: the story of my son

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On a midsummer’s night, he came rushing into the world – in all of his 9 pounds, 6 ounces of glory. When they laid him on my chest, he raised a big baby hand and thudded it down on me, somewhat remniscent of a tiny wolf cub. Below our hospital room, a beautiful statue of Jesus with the children seemed to stand watch – reminding us where this precious boy came from and Who he would always belong to.

The next day, his pediatrician came to visit. She looked him over and declared him healthy – with one potential problem. A potentially big problem. She was concerned that he might have been born with a spinal cord defect that can be related to spina bifida and the tragic diagnosis of anencephaly.

He would live: he was in no danger of losing his life, unless of course, you consider the danger inherent in a serious surgery for a baby.

I am notorious for my focus on the future, instead of the present. And so, for the next three weeks, my mind continually traveled to the time around his first birthday, when my tiny and helpless son might require a surgery to untether his spinal cord.

The consequences of rejecting the surgery?

Possible incontinence for life. Possible paralysis. And once these difficulties begin to occur, they cannot be reversed. Surgery can stop the defect in its tracks, but it cannot undo damage already done.

When he was two weeks old, our pediatrician reexamined my son and thought it was still very possible that he had the defect. We were assigned to a very experienced and well-reviewed neurosurgeon.

The drive down to Children’s Hospital with my husband was a difficult one. What would be the sentence for the next year of our son’s life? What things would he have to endure? What would we watch for? And of course, always present in the back of my mind – what was the risk of death?

The neurosurgeon took all of five minutes to look at our son and declare him completely – and without a doubt – defect free. No need for follow ups, no need for future worry. Nothing. He had no tethering of his spinal cord at all. It was a false alarm. The surgeon had no sooner shut the door behind him with his jolly tidings then I collapsed into my husband’s arms weeping.

It was as if my son had been given a new life entirely. (For the last three weeks, I’d constantly danced with him to Carrie Underwood’s song “I Will See You Again” because, of course, if he died.)

But, no. Now there was no risk of anesthesia or spinal cord surgery on a one-year-old. He was free to enjoy his world and run like the wind forever.

There were several beautiful things that happened during these short – and eternal – three weeks. But one of the most important was a realization I came to. A realization that traveled all the way from my mind (where it had always resided, I suppose) and down to my heart, where it blossomed.

No matter what was “wrong” with my son, I would love him the exact same. He was my son, defect or no defect. And he was the same little person that had grown beneath my heart for nine months, regardless of anything he or I or his father might suffer in caring for him.

Nothing – no defect, no MRI, no surgery – could change his value to me. This sounds obvious and simple. Yet it’s one thing to believe it, and quite another to have the opportunity – albeit a short one – to experience it.

My experience reinforced four things I wish all parents would realize, especially when they are facing a troubling diagnosis of their own child:

  • His value is not wrapped up in his defect (or lack of one).
  • His right to life is not wrapped up in his defect.
  • Doctors can be wrong and sometimes worst case scenarios are not worst case at all. There are often many more options, solutions, or opportunities than are originally told. (See the stories linked to in this bullet point and also this, this, this, this, and this.)
  • If it would have been wrong for me to take my son’s life right after birth (when I found out about his possible defect), how would it have been alright for me to abort him because of a defect four months or six months earlier in my womb?

My son would still be the same strong, larger-than-life, funny little man with or without a defect. Because that’s something he is, not what his body is.

And even if he had been born with the worst defect I could imagine, I would have been the most blessed mother in the world simply to have given him life.

A parent’s love for their child knows no bounds. It is not restricted by defects or governed by genetic conditions. It is a love that always pursues the life of their child; that chooses every chance for life for their child. No matter the pain to their heart, no matter the cost to them personally, a parent’s love calls them to rejoice in the life of their child – no matter how short – and to celebrate it.

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