Gastroschisis

At my 20 week scan my partner and I sat amazed in front of the screen watching as the sonographer pointed out all the amazing features of our baby. Little did we know what we were about to be told!

The sonographer said “i’m just popping out to check some dates”, two minutes later she retured looking very concerned. She sat back down and said “unfortunately I have found a problem and your baby has a hole in it’s stomach around the belly button. The consultant was on his way and would explain more, we were put into a side room and it was the longest 5 minutes ever.

The consultant explained the baby had a hole to the right hand side of it’s belly button. With little more information given than that, the first question i asked was “does this mean the baby will die”. To which he replied “i can not tell for sure”.

The next 4 days were a blur and spent most of the time on the internet looking at diffrent options/possibilities. As we all know the internet can be a blessing and a curse, we found good info and terrible info but as we had never heard of this before all information was welcome.

We then saw consultants, sonographers, surgeons , Counsellors and more. The more people we spoke to the more we understood things were going to be ok (not easy but ok).

The last months of the pregnancy dragged on and I went into labour naturally at 36 weeks, after 24 hours of labour I was rushed into theatre for a c-section. She (Frankie-Lee) came out moments later very peaceful. We could not hold her, just listen to her as the neonatal nurses cleaned her up ready to go to intensive care.

My partner managed to take some great footage of her on camera and I cherish it to this day. These were the fisrt moments of my baby’s life and were were metres away from each other!

We were allowed to hold her before she went down for surgery which was only 1 hour after she was born.

3 hours later a surgeon came to see us to say she was doing brilliant, she had a primary repair (no silo) and did not even need a ventilator!

In all we spent 5 weeks in hospital and she (Frankie-Lee) was wondeful. Each day had it’s own challenges and the smallest fall would feel like the end of the world. I soon realised not to think too far in advance and take each day as it comes.

Frankie -Lee is now a normal 2 year old with all the regular functions. Looking back at our photo’s I sometimes have to ask myself ‘is that poorly little girl really the same one’!

Frankie-Lee is the best thing that has ever happened to us!

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!

Our daughter Tanisha was born on the 11th of December 2001 weighing 4lbs 12oz`s.

She was diagnosed with the Gastroschisis condition at my partners 12 week scan at the natal ward within Sunderland General hospital. Before the diagnosis came it was just another scan which you tend to look forward too especially as a new parent, as I was going to be.

My partner already has two other daughters who underwent normal pregnancies and deliveries without complication, so when we were called back to the hospital and Gastroschisis was diagnosed it came as a huge shock.
Immediately we both started asking questions,

• How has this happened?
• Is it genetic?
• What have I done to cause this?

You come away from the hospital wondering if you, your partner and ultimately your baby are going to get through this, all of these concerns we know now are perfectly natural, they are a natural human response when you have just received the worst possible news as a parent to be.

Every parent all over this planet only ever wishes for a healthy baby so dealing with the shock of Gastroschisis without even knowing the full implications of what it all means is only the beginning of the road for parents of unborn babies with the condition.

After the initial diagnoses we returned to the hospital every week for the next 16 weeks to monitor Tanisha`s heart rate.

From the early stages of my partners pregnancy her heart rate was a bit irregular, but you come to realise later on and just before delivery that this needs to be monitored in readiness of the delivery.

After leaving hospital for the first time we headed for the nearest library to research the condition for ourselves, unfortunately we only came across medical books that only described the condition in a way that only a doctor would understand.

We then used the internet as a tool to research the condition, but back in 2001 the result was more or less the same, so we seemed to have been left with more questions than answers.

It was not until we made our first appointment at Newcastle RVI to meet Professor Ravencroft who was to be the consultant that would deliver our baby did we get the answers we were looking for.

Dr Ravencroft explained the delivery procedure to us and how our baby would need an immediate operation to limit the extent of the Gastroschisis, this advice came 2 days before my partner was due to be admitted where she would undergo inducement at 38 weeks.

The evening before the planned delivery date we travelled by train the short distance from Sunderland to Newcastle Central Station where we took a slow walk while we discussed between us everything that was going to happen.

On admittance to the hospital we were given a private ward within the delivery suite and this is where the lack of sleep began.

At 5.30am the following morning my partner was given a pill to help induce the delivery, little were we to know that it would be a further 18 and a half hours later that Tanisha would arrive.

Those anxious hours were spent watching the t.v, reading papers and wandering aimlessly around the hospital grounds with the unknown in the back of our minds.

The contractions were still too far apart and dilation was not at the right level for delivery so a further pill to help was given.

Our consultant, his nurses and other delivery staff were waiting on standby ready for the moment which did not arrive until 11.55pm at which point what seemed like an army came rushing into the delivery ward pushing an incubater whereupon Tanisha was immediately put on oxygen and after all of her signs were checked she was passed back to her mother for not more than a few minutes before she was rushed to the Special Baby Care Unit to undergo her treatment.

For the next hour or so I spent a small fortune using the public payphones telling family and friends that our daughter had arrived and trying to reasure them that everything was ok, while not knowing exactly what was going on myself.

We had already been awake for more than 36 hours so it was hardly suprising that we dropped off for what turned out to be not more than an hour at which point our midwife woke us to tell us tat we could go and see Tanisha now in the baby ICU.

We had already visited the unit on our initial consultation with Professor Ravencroft who introduced us to the staff as we warily looked around at the incubaters and machinery and listened to the beeps of monitors and other equipment.

When we arrived in the baby ICU to meet our daughter confronted with what seemed like far too many tubes and wires I was again full of questions for the nurses there, I am more than sure thay would have answered the same questions a hundred times before, but for me I had to understand how each and every monitor and tube performed.

One of the hardest things to control is your babies body heat and Tanisha was having difficulty with hers but thanks to the constant nursing care given to our daughter during her thankfully brief stay in the ICU she got better quicker than most babies with Gastroschisis can expect.

When the time came to leave the ICU to move to a less dependant ward we could only thank ourselves very lucky, especially with everything that was going on around us. We did unfortunately experience the loss of other babies and children around us at the time and we can only thank the grace of God for our fate.

16 more days were to pass before Tanisha was allowed to be discharged but those early days within that ward were not as easy as they might first sound.

The PN line was the most harrowing experience during our stay. Initially we had to sign a release form because of the risks that go with such a delicate procedure, this was no easy task.

There were not too many options open to us, the form was signed and again Tanisha underwent her next procedure. The long line was to be inserted into one of her arms but after my phone calls to the operating theatre i was told that the first attempt had failed, then they tried her other arm without success, then one leg, then the other every time her veins would collapse.

Eventually the Long Line was inserted into her head leading up to a short distance from her heart, now she could start receiving the essential vitamins and minerals to keep her going until she could receive her first feed.

Tanishas first milk was going to be from her mother, who for the first time had to express her milk using a pump, this was not to her liking despite the advice given by the nurses that this would help. Tanisha then went on to 5ml of formula milk every 4hrs, this was the beginning of the process of persuading the bowels to work.

Waiting for that very first bowel movement at the same time as waiting for the colour of the contents from the naso-gastric tube to change was not the fastest process.

Sooner or later it would happen though and that day did come, you knew from all the questions you were asking doctors and nurses at the time that the poo was the milestone you were aiming towards before the next milestone of taking your baby home was to arrive.

We had completely disregarded sleep while we attempted to rest on the Z bed within the same room as Tanisha, but to this day we were very thankful we never left her side save the od meal of our own, even then we would sit in the hospital cafeteria filled with guilt that we could actually eat while she was not managing more than 15ml of formula every 2 hours or so.

Christmas day came and went, this was no time for celebrations, we were still struggling with the fact that we could not carry our baby more than 3 feet away from her cot with the amount of wires still appearing from what seemed like a million angles.

We had our visitors of family and friends with plenty of get well cards, we were thankful for the visits it stopped us from going insane.

The big day arrived when my partner was told that Tanisha could go home, I was returning from one of my brief outings to the news, which I immediately disbelieved because of my naturally pesimistic view that we were going to be there for months.

It was actually true, all we had to wait for was a doctor to remove the Long Line and we could go, I immediately made arrangements for a lift home and waited in anticipation for the line to be removed so that we could put the new dress we had bought on her and take her out of the hospital like so many other parents had done while I was grabbing a bit of fresh air, at the same time wishing that was us taking our baby home.

That time had arrived Tanisha was coming home.