Gastro what?

The morning of the 15th of December we were very excited as we were going to see  our little baby on sonar again! It was the routine fetal assessment scan just to check for abnormalities like Downs syndrome and other more rare chromosomal abnormalities with nuchal translucency measurement.

All went well during the scan and we saw our little baby and how much he has grown in only 12 weeks! We even got the opportunity to take a video of his heartbeat and the high we experienced couldn’t be matched by anything. As we neared the end of the scan and the doctor (she will remain nameless for obvious reasons to follow below) started to tell us what she saw, I could see something bad is coming… When she said that there was an abnormality she picked up during the scan, everything just stood still and it felt like all life inside me was drained instantly. She said that is seems like the baby’s intestines are outside of his body and it is called Gastroschisis (Highlighted red section in picture). The severity of the case cannot be given as it was still very early in the pregnancy.

Once we were back in her consulting room, we started asking questions about what is it, how bad is it, what can be done etc etc. Now the problem I have with the following and also why I prefer to keep her name anonymous is

1. She told us to go and Google Gastroschisis to get a better understanding on what it is and what to expect to see when the baby is born.
2. We were also told that should we wish to do so, we can still abort the baby if we didn’t want to go ahead with the pregnancy.

To this day I cannot comprehend why a highly trained medical professional would tell us the above two points? My answer to the above statements given by her,

1. When you Google Gastroschisis, you will see there are no positive news really, let’s face it, if all goes well with you, you will not go and create a page about it to tell the world. The only information we could get was all the negative stories of babies and adults with Gastroschisis and how terrible it is to live with it. The more we searched the more depressed we became and it felt like our baby would have a terrible live and always be in pain. Now looking back over the last few months/years and seeing how happy Gavin is, I know that there are 1000’s of good stories out there, just not on Google. That is also why we decided to create this website and hopefully be that one story you read to see that it is not as bad as it seems. To see some of Gavin’s milestones go to Progress & Development page.
2. The fetus was only 12 weeks old. Until around week 22 you can’t really see if the defect has hindered the babies growth and development of major organs so there is no real reason to tell us on that day that we can abort the fetus should we wish to. If this wasn’t part of the doctors words to us, I think the whole Gastroschisis story would not have been such a big shock.

That day as we drove home we were pretty quite in the car, there was so many emotions running through us and I didn’t know where to start with it all. When we finally got the courage to give the grandparents-to-be a call and give them the news, it was just as big a shock on them as on us. Seeing that we live in the ‘Google Age’ they too jumped on the internet to see what it was all about. Over the following 48 hours we had so many ups and downs, but a few people got us through this which for me was the toughest time we had during the entire pregnancy. Our families were there through it all every step of the way, and we will always be grateful to them. You can read ‘A Grandmothers View‘ to get another perspective on the story. Then our gynecologist, Dr Johan Cillie – he was already on vacation by this time, but we sent him a message and he gave us a call that day just to tell us do not do anything stupid, it is not as bad as it sounds.

Over the course of the next 2 weeks, so many things fell in place for us. We got an appointment with the leading Gastroschisis surgeon, Professor Martin van Niekerk who saw us on the 5th of January and also reassured us that all will be ok. We met with another family who had a Gastroschisis boy who is now 10 years old already. Once we got the support of our family, friends and doctors behind us, we knew that all will be ok.

To conclude this section of the website, from my point of view, the most important thing you can have once you find out about Gastroschisis is the support of family and friends AND also to talk to people who went through the same ordeal as you are going through. I know we can’t fix the problem for you, but if in any way we can help you get through it all a bit easier, we are here to help you.