Hand to Hold's Official Blog: Written by Parents for Parents

A G-Tube is Not a White Flag

hensel twinSurrender. 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!
Michelle Hensel About Michelle Hensel

Michelle Hensel (TX) is the mother to three children. Her oldest daughter was born full-term and she unexpectedly delivered her twins at just 23 weeks 5 days, with each weighing 1 lb. 2 oz. and 1 lb. 8 oz. They spent 133 days in the NICU. Although they still face challenges due to their prematurity, they are now active, healthy toddlers. Michelle chronicles her family's journey with former micro-preemie twins and their big sister on her personal blog.

Comments

  1. Great post, Michelle! Very good ideas to consider as I’m in the g-tube-or-not battle myself at the moment. I appreciate your experience and your willingness to share!

  2. Wow what an amazing story. I had a 2lbs preemie and luckily not many complications. I can only imagine how tough everything was/is. So glad to here that the G-Tube worked:)

    • Mia – That is wonderful that you did not experience many complications. Isn’t it amazing how far the field of neo-natalogy has come and how much they can do for our tiny babies? For all the issues that micro-preemies are faced with, we feel extremely blessed that our only major issue has been feeding/vocal cord/oral aversion issues. Looking at my 2 year old twins now, no one would guess they weighed only 1 lb. at birth. We are very blessed!

  3. On the verge of having to make this decision myself, I know all too well the feelings that come before deciding whether to keep the ng tube or opt for a g-tube. Thank you for sharing your experience as it comforts me in a way no doctor or parent of a non tube fed child can.

    • Sandra- I’m glad you found some comfort in reading my post. I knew other moms were feeling the same way I did. It is a really difficult decision which is complicated by the emotional rollercoaster we have all already been on. I wish you the best in making this decision for your child.

  4. Reading this story is much like hearing our own. I was pregnant with twins and our boy Sam was stillborn. Isabel came at 23 weeks at 1 lb 7 oz. after 128 days in the NiCU, she came home on oxygen. Feedings went really well for a while, then screeched to a near halt. We struggled with her weight for months, finally got her off oxygen about 6 months ago, and finally her weight has picked back up. To my shock, a gtube was suggested the other day because of fears regarding her hydration since she is only “safe” on stiff honey, and because of fears for her lung health (although she has never had pneumonia, etc).

    I am so scared to make the wrong decision! Did your son have reflux? I’ve read so much about the gtube worsening reflux and causing retching and feeding aversions. Did this happen to your family?

    So glad you have shared your story.

  5. Our little girl was born at 27w5d and came home on an NG like your little girl. She also got off the NG tube and onto bottle feeds (albeit concentrated formula+breastmilk). I am curious what type of sippy cup did you use with your son? Our warrior princess has aspiration issues, so I’d like to know which one you used.

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