At my 12 week scan my baby was diagnosed with gastrochisis (his bowel was on the outside of his body). We were put into a side room, in tears. We had so many unanswered questions and had to wait for a specialist nurse to come and explain everything. I am a neonatal nurse and I knew what gastrochisis entailed but I didn’t know if there were any other organs outside of his body or if my pregnancy could continue. We were told we would need extra scans roughly every 4-6 weeks to observe our baby and I would be induced at 37 weeks as stillbirth is higher after 37 weeks in babies with gastrochisis. I had a scan at 14 weeks where we found out our little bub was a boy – we knew from this scan he was going to be very cheeky sticking his bum in the air showing us everything he had!
Our 20 week scan was scheduled when I was 19+6 days. This scan provided an in-depth picture of our baby boy to check for further complications. We found he had dilated bowel loops, which for his gestation was abnormal. We were told that he could potentially get dilated bowel loops at around 32-35 weeks gestation, so this was too early on. We were also told that having dilated bowel loops at week 20 gestation was a potential sign of having Down Syndrome, Cystic Fibrosis (CF) Edwards or Pataus Syndrome. Hearing those potential diagnoses on top of already having gastrochisis was heart breaking. I was offered several blood tests to see if I was a carrier of CF. I was also offered an amniocentesis to check for abnormalities. I declined, he was my baby regardless of any abnormalities that he could have. A long week went by and the bloods for CF came back negative – we had no answers to the reason for the dilated bowel loops.
It was decided I would be induced at 36 weeks as it was safer for our baby
On the day of my baby shower my waters went! I was 33+1 weeks.
I arrived at the hospital and was given paracetamol and told it was probably braxton hicks. I was put onto the monitor. I was having regular contractions.
I was given 2 lots of steroids for his lungs, and magnesium to protect his brain. I was also put on a hormone drip to try and stop labour from progressing. I had been on the hormone drip for 20 hours with no improvement to my contractions. Our consultant was on call that night and he decided it was best for the hormone drip to allow me to labour.
Our baby boy arrived at 6:09am the next morning. We named him Grayson, he weighed 4lb3oz. He was placed onto my chest and I was allowed to dry him off before the NICU team took him. I have been to many deliveries as a neonatal nurse and it wasn’t until that moment I understood exactly how awful it was for parents watching their baby be taken away in an incubator – there is no feeling like it.
At 8:30am a surgeon came to gain consent for Grayson to go to theatre to have his bowel put back inside. He said usually gastrochisis is simple and the bowel will go back in. However Grayson was complex and he was hoping to save 50% of his bowel. I immediately thought he can survive with 50% can’t he? This happens, doesn’t it? We went down to NICU to hold Grayson before he went to theatre. Hr was in theatre for three hours before we were told the devastating news that they couldn’t put any of his bowel back inside. He was left with 10-15cms of short bowel – a diagnosis of short bowel syndrome. We had thousands of questions, would he need a bowel transplant? Could he receive our bowel? What will his future entail? The surgeons told us it was very unlikely for Grayson to be able to eat and drink and his future would be limited in terms of being able to play sports. Why was playing sports so necessary at this point?
Grayson was ventilated for 2 days to control his pain with morphine. He was then extubated and didn’t require any further breathing support. He had an NG tube in place to help his gastric output which remained dark green. My plan was to breastfeed Grayson to give what remained of his bowel the best possible chance but hearing the surgeon say he will never be able to eat and drink. I thought there was no point. On day 3 a nurse asked me if I had thought about expressing for Grayson in the hope that one day we could try him on feeds. I am most thankful to her for treating me as a first time mum and not a nurse. She spent so much time talking to me about expressing. I had a huge milk supply ready and waiting for Grayson when he was ready. On day 16, Grayson tried 5mls of breastmilk via a bottle for the first time and he loved it! Feeding him went very slowly, he had 5mls of milk every 3 hours, every 12 hours it increased by 1ml.
I found it very difficult in the first few weeks to adapt to being Grayson’s mum and not his nurse. I found myself watching other babies monitors bleep and wanting to intervene. I spoke with a counsellor a few times a week where I was able to be a “mum” and let all my emotions out. I was given a room at the Ronald McDonald House as we knew we were in this for the long haul – the end of April was our potential discharge.
After nearly 7 weeks on NICU, we were moved to the children’s gastro ward at Central Manchester hospital. Grayson had a broviac line inserted for his TPN – it was time for me to learn how to give Grayson his TPN so that he could come home. After several infections, a broviac line removal and a new insertion, meningitis, a long line infection, we were finally able to go home, after 5 long months.
Grayson is now 8 months old, he is on 4 nights of TPN a week with 3 days rest. He eats and drinks anything he wants, except dairy. We have currently been recruited into a drug trial called Tide to try and get Grayson off his TPN – the future looks bright.
I hope that f I can use my story to help others. No matter what life throws at you there is always hope and that will get you through every day. It gets easier, you will have brilliant days, you will have terrible days but every day gone is a step closer to home. Most importantly, look after yourself. It’s OK to not spend 24 hours beside your baby, allow yourself time to rest and to heal. I remember describing how I felt to a counsellor as though I was grieving, grieving for that “normal” life you’re supposed to have when you have a baby. Taking your baby home after a day or two in hospital. Family and friends coming round to visit you at home. Watching your baby sleeping in their Moses basket you spent so long picking out. Wearing all the beautiful outfits you had washed and hung up nicely in their wardrobe. Holding them whenever you want to without having to ask for permission – all of those things I never got to experience. It is so hard. Stay as positive as you possibly can, speak to other mums and dads on the unit. Share your story, share your feelings.