Surrender. Defeat. Failure. These are the words that circulated in my head when I reluctantly agreed to a gastrostomy for my son.
My son and his twin sister were born 16 weeks early. Due to a complication of a PDA surgery at only two weeks old, my son was left with a paralyzed vocal cord. After two failed swallow studies and a misdiagnosis of bilateral vocal cord paralysis in the NICU, he was given the orders to stop all oral feeds. We brought both of our twins home after 133 days in the NICU with nasal gastric (ng) tubes, feeding pumps, and less-than-adequate training on how to use the equipment.
At a painstakingly slow pace, my daughter eventually learned to take enough of her bottle that we were able to stop feeding her through the ng-tube. For my son, the process of learning to eat was far more challenging.
After two months of being home, he finally passed a swallow study, and at his follow-up ENT appointment received a diagnosis of having unilateral vocal cord paralysis rather than bilateral vocal cord paralysis. Only preemie parents who have been told the worst can celebrate when a doctor tells them their son has a paralyzed vocal cord. At least both of them aren’t paralyzed!
He had missed the crucial window to learn the complicated suck, swallow, breathe pattern both in utero and later in the NICU when he wasn’t allowed to eat due to the risk of aspiration. To complicate matters, he had developed a serious oral aversion most likely from all the tubes stuck down his throat and in his nose. At six months old, we were trying to teach a baby who would refuse for anything to touch his lips, mouth, or tongue how to eat. As one can imagine, this was a near impossibility. Accepting a pacifier took months of therapy. By around eight months old, he would accept drops of milk on his lips, and if we were lucky, we might be able to get him to take 10 mLs from a nipple. At nine months, our pediatrician and GI agreed that the time had come to move forward with a g-tube. He was not making enough progress to justify an ng-tube any longer.
I left the appointment in tears. I felt the doctors had given up on him and were asking me to do the same.
So much guilt already surrounded me. Although I knew there was nothing I could have done differently, I felt tremendous guilt that I couldn’t carry my twins to term. My body had failed them, and because of that, they were left to endure so much pain in the NICU. Because they left my womb early, their ductus ateriosus didn’t have time to close in utero. As a result, they both underwent heart surgery at only two weeks old, weighing less than two pounds.
Mothers are supposed to protect and nurture their young. Instead, my body had rejected mine.To combat the feelings of guilt and helplessness, I, like many NICU mothers, read every book, consulted with the neonatologists, scoured the internet for every article relating to preemies, and listened attentively to every suggestion made by the therapists. I was determined. I would do everything in my power to help my babies meet every milestone – including learning how to eat.
When talk of a g-tube began, I resisted it every step of the way much in the fashion of a toddler throwing a tantrum. I was scared of it. I didn’t want to go back to the hospital. I didn’t want my son to endure another surgery. I didn’t want to learn anything new. I didn’t want my son to have yet another scar. I didn’t want my son to be different. I thought of a million reasons why I didn’t want him to have a g-tube.
Despite my resistance, the surgery was scheduled. And, it was the very best thing we could have done for him.
Feedings were no longer stressful. He was so much more comfortable without the ng-tube down his nose and back of his throat. In therapy, he began making quick progress towards eating. I know this doesn’t happen for every child, but for him, it seemed like once he was rid of the ng-tube, he began enjoying food. He put in a lot of hard work in therapy learning how to drink from a bottle.
We still deal with swallowing issues related to the paralyzed vocal cord. He drinks from certain sippy cups that allow for a slower flow, but he now loves eating. By his first birthday, he ate a cupcake! By his second birthday, he wanted to eat all the cupcakes!
For some parents whose children are not able to swallow, a g-tube is not a choice. It is a life-saving medical intervention. For some parents, their pediatricians or GI doctors may leave the timing of placing a g-tube up to them. This is usually the case when a child is eating some but not enough for adequate weight gain and growth.
For those parents who are dealing with the decision of placing a g-tube, remember that it does not mean you are giving up on your child. It does not mean that you are throwing up your hands in defeat. It does not mean you have failed your child in any way. Think of it as the next step in your journey. Try to let go of any guilt and think only about what will help your child the most. You are stronger than you think. A g-tube is not a white flag; it does not mean surrender, defeat, or failure. It means strength, growth, and love!