Our Gastroschisis Birth Defect Story by Renee Barendregt
Learning of our precious son at just 12 weeks at our routine scan was diagnosed with Gastroschisis. Breastfeeding was something so important to me. I would like to share in brief, our journey with feeding.
Harry was diagnosed with Gastroschisis when he was in the womb at only 12 weeks. Gastroschisis is when the bowel is protruding out of a hole on the stomach that is meant to close over around 10 weeks. Depending on the size of the hole, more than just the bowel can be growing on the outside.
As you can imagine this was a huge and heart breaking shock for my partner and I. We learned that our baby boy would be taken into surgery as soon as he was born. Before I even conceived, breastfeeding was extremely important to me. I believe it is a true blessing to nourish our children in such a natural, beautiful way. But I knew it wasn’t going to be easy to begin with. I knew it would be challenging, especially after learning that he would not feed for possibly the first 2 weeks.
Harry was born by emergency Cesarean at 34 weeks and 5 days weighing 2kgs. Although we were nervous, we had the whole pregnancy to somewhat ‘prepare’ ourselves. Harry was taken from us straight away. All I was able to do before he left was touch him with my finger. There were doctors surrounding him, helping him breathe. At this point I was sad. I didn’t get skin to skin contact and couldn’t breastfeed him straight away.
For the first 3 weeks of Harry’s life, he was not able to have any milk. He did not have one single drop of milk for the first few weeks of his life, because his bowel was not working properly yet. Yes, you’re right, he would have been starving. And for me as a mother this was heart breaking. I had my alarm set 24 hours a day and pumped every 3 hours. It was hard and confusing because I couldn’t be with him over night. Every part of me was yearning for him.
I would take my breast milk into hospital each morning and by the time he could actually have any, there was bucket loads.
I couldn’t directly breastfeed him straight away, he was fed through a tube in his nose. The doctors had to monitor exactly how much was going in to determine that his bowel was working properly. He started with a tiny 2ml every 3 hours until his bowel “woke up” and was able to tolerate more.
It got to about 3 and a half weeks and they said I could try and breast feed. Although I had to drain my boobs first they explained he still would get a small amount! I was so excited the moment finally came. He fed wonderfully.
As a mother, I cant help but feel guilt over those weeks. I wasn’t able to respond to my baby when he was hungry or scared or be there next to him 24/7. But I gave him as much comfort as I could in the situation that faced us. The nurses fell in love with Harry, they always said he was so good and never complained, even when he was hungry those first few weeks.
Our breastfeeding journey was a little up and down when Harry got home from hospital, but we have stuck at it and are still going. Harry is now nearly 10 months old, and is as healthy as any other ‘normal’ 10 month old. At this stage there will be no further issues with Harry’s tummy.
If you are interested in learning more about Harry’s condition follow us on Instagram. he’s also pretty cute to look at :) Thanks for taking the time to read our story.