Gastroschisis

At one of our earliest antenatal appointments the midwife said “Your AFP results have come back a little raised, this is nothing to worry about…and its nothing to do with the baby, you may be at risk of pre eclampsia later on, but we shall send you to the hospital for a scan to make sure.” In retrospect this statement was a little confusing, but unusually for me, I was quite trusting and thought no more of it until the day of the scan. Unbeknown to me at the time both my mum and sister were confused by this midwifes explanation and feared the worst.
At week 18 we arrived at the hospital for our scan and the sonographer was extremely tentative and asked us if we fully understood why we were there. Due to the midwifes explanation we were quite noncholent and said that we did, but obviously, we did not. When the sonographer told us what she had found I think she could see we was not exactly prepared for this type of news and took us to a consulting room to speak with the consultant. First of all though a midwife came in and explained that she really didn’t know very much about the condition and said that it was highly likely that I would need to have a caesarean birth and quite early on. The midwife then left and in came the consultant whos greating was “Hello, isn’t it terrible news!” So now full of fear that this was a terrible thing for my baby to have, she then told us that she too didn’t know much about the condition but at one time termination was an option!

I can barely remember the drive home, and when I arrived at work the next day my colleague sent me home as I was in such a state of shock I was no use to man or beast. Fortunately we only had to wait a couple of days to see the wonderful staff at Addenbrookes Hospital. When we arrived there the condition was explained fully by the obstiatrican, pediatric and surgical consultants. Obviously we were still concerned and worried but it was such a relief to hear that I would like have a normal birth and that our son would only be in surgery for about an hour and was 90% likely to experience no further problems following this.

If I could say to that the next 6 months were hassle free I would be lying! I hated being pregnant and felt ill all the time, but in terms of the baby’s health, all of our scans were good and he experienced no adverse reaction to his bowel. I was finally given an induction date for february at 37 weeks and 3 days gest. When we arrived at the hospital for the induction neither of us had slept the night before through the sheer excitement. We waited patiently in a delivery room from about 9am wondering when our time would come. At 4pm a doctor came to tell us that there were no cots available in the neonatal unit and so we should go home and come back the next day! Obviously this was another sleepless night!

We arrived back the next day at 7am as instructed and waited… and waited…. before being told it was likely that we would be sent home again as still no cots were available. At 2pm I started to get very stressed and packed up all our bags and informed the midwife were off! She asked us to hang on as the consultant was on his way to see us. Fortunately we waited and when he arrived he stated that he had negotiated a cot on the pediatric intensive care ward and the induction would commence after all! What a relief!

And so at 5.30pm it “all kicked off” and at 6.30 I went for a walk around the hospital. At approx 7.00 my contractions started. Turns out I hated birth too!! The rest of the night is blurry in parts and totally unfathomable in others. Do not talk to me about birth plans, the thing might as well been ripped up and thrown out the window. I took gas and air, the epidural, forceps, suction and an episotomy!!

At 1200 the following lunchtime I remember being surrounded by a full team of doctors, surgeons and nurses yelling at me to push, but I just couldn’t give any more. I heard the head consultant saying that I had gone too long and that I needed to be prepped for a c section. I was so disappointed and looked to my husband for his help to say ‘No!’ but as I looked around he was welling up and looked in such a state of shock and anxiety that I decided to give in and let it all be over for his sake. However, an other doctor insisted that he only needed a few more minutes and that he was certain I was moments away, and so somehow I managed to summon up some strength and pushed once again. With the help of the forceps and suction George was born at 1215pm weighing 5lbs 13oz.

I was handed him for 3 seconds, and all I managed to do was look at his little face, and then conciously looked down at his bowel to check the colouring (after reading a post on here by another member). It was a lovely pink colour and I remember thinking “he will be fine!” My husband left to see George in the Neonatal unit and sign all the consent forms, and within minutes all the doctors and nurses left too and I was left alone, still confused by the happy, thinking “Oh party over!”

George was operated on within 2 hrs and after the op he was off the ventilator within 1 hr. The staff were amazed. We went to see him in PICU and he was so small and hungry! I am not sure if it was the lack of contact I had had with him at this stage or the happy were still leaving me a bit dazed, but it just didn’t seem real and he certanly was stirring an emotion in me but he didn’t seem like he was mine. But that night when I went back to the ward and my husband went to his room, I was left alone on a ward with mothers surrounded by their babies and it was the worst emotional pain I have ever felt.

The following days were tough and I don’t think I have ever been able to express to anybody how they really felt, you will all know of course, but George was doing well and needed very little nursing care in all. By day 9 I was given the opportunity by a wonderful nurse to try breastfeeding. She saw how strong Georges suck was on my little finger and said there was no harm in trying. George took to it straight away and we were discharged 3 days later!

All the staff said that they had never seen a gastro baby do this well and certainly to be going home so soon and breastfeeding exclusively was no mean feat.

We have been home nearly 7 weeks now and it has been hard. George wants to feed every hour of the day and sleeps very little. Yet he has been slow to put on any weight. He is now 6lb 8oz after 2 very good weeks, but has now been given Infatrini to assist. I am still breastfeeding and love doing so, and I am a sensible well adjusted person, yet I do still feel guilty that I can’t give him all he needs. I do find myself saying sorry to him a lot, and my husband asks me what I have to be sorry about!

We have visted an osteopath twice now as I was concerned about the amount of sleep he was getting and the constant painful crys, and I do think that that has helped, although he has been poorly this week, so he may just be having a rest from the crying until he gets better but I’ll let you know.

Having seen the surgeon today for his follow up appointment he is very happy with Georges progress and the only thing of any note was that he now has a small umbilical hernia, but that will heal in time and is very common in a ‘normal’ baby.

And so now I am just waiting for a normal life to begin, but I expect I’ll never stop worrying about my little soldier!