Pyloric Stenosis probably sounds like a really complicated medical term to most people, but to us it makes perfect sense. This is our honest journey through probably one of the most stressful and worrying times of our parenthood journey so far..
So firstly… What is Pyloric Stenosis? It is a condition where the passage known as the Pylorus between the stomach and the small bowel becomes narrower which closes the inside of the passage. This then stops milk or food passing in to the bowel to be digested. In most cases, a baby with Pyloric Stenosis will initially start by bringing up small amounts of milk after a feed, and the over time this will become more forceful and become projectile. If it isn’t treated the baby can become dehydrated and not gain weight. Pyloric Stenosis is common in babies, usually develops six weeks after birth and is more common in boys than girls. Pyloric Stenosis is usually treated by an operation under general anaesthetic. The operation is called a “pyloromyotomy” where the surgeon cuts through some of the thickened muscle which will then widen the passage so that milk and food can be digested. Most of these are carried out using keyhole surgery but sometimes open surgery can be suggested. Unfortunately due to the effects of Pyloric Stenosis there is no alternative to an operation. Once an operation has been done it is unlikely that any further treatment will be needed, and the vomiting should reduce and stop more or less straight away.
So I guess I’ll take it right back to the start. The problems for us really started when Mia was just over a week old and the Health Visitor came around to do her normal routine checks and noticed that Mia had a tiny amount of thrush in her mouth so gave us a prescription to get it sorted. Looking back it was just a coincidence, but as soon as we started using the medication, the sickness started. At first it was just small amounts so we thought nothing much of it, but it progressively got worse. We booked an appointment in with the GP and she agreed that it may be due to the medication we were given, so gave us a new prescription for an alternative type of medication which was an oral gel to spread around her mouth. The sickness didn’t get better, if anything it got worse.
It got to the stage where her sickness was so bad it was projectile, basically going to the other side of the room. It is not an exaggeration, that’s really how bad it was. We had been to the doctor and spoken to the Health Visitor about it, and felt like we were banging our head against a brick wall.
When Mia was about two and a half weeks old, we made our first trip to the Children’s Emergency Department at Northumbria Specialist Emergency Hospital (NSECH). We sat in the waiting room, and were then taken in to one of the wings where Mia was given a bed and we were told we had to try and catch her wee in a cardboard bowl. So we waited, and waited – and as most parents know when you are waiting for your child to do something, they never do. So as soon as we took our eye off the ball she decided to wee, all over herself and the hospital bed. We were probably there for about two and a half hours and we were told at that point that she had Gastroenteritis and if she wasn’t better in 2-3 days to take her back.
Two days passed, and she hadn’t remotely gotten better, if anything she had gotten worse. So we made our second trip to the Children’s Emergency Department. We advised them that she was no better, and this time we were given our own room. Again we were told to try and catch her wee in this bowl. We waited, and waited, and were fobbed off again. This time they made us feel like because we were first time parents we were over reacting. This time, their reasoning behind her projectile vomiting was because she had a milk allergy. They didn’t even offer any help or support, they just sent us home and told us to ring the GP.
I will always remember the day it dawned on us that something was seriously wrong with Mia. Allen was at work and my Grandma had phoned me to see how Mia was doing and had said if she wasn’t taking her milk to at least try and get her to drink some water to keep her hydrated – it actually wasn’t anything I had thought of so I gave it a go. To no surprise, it all came back up, so I tried to give her a few ounces of milk – this is where it started to get scary. She brought it all back up again, but this time I noticed that there was a tiny bit of blood in it. I rang Allen to tell him and he said to keep an eye on it and if it got any worse he would come home so we could take her straight to A&E again. I tried some more and she was sick again but this time it was just her milk, with no blood in it. The next morning we went to change her nappy as usual, and had noticed that she hadn’t wee’d. After we had put her on the mat she had projectile vomited again without having any milk so we got her straight in her car seat and straight down to the hospital.
We were waiting to be seen, and she was sick again but this time it just wouldn’t stop – she started choking in her own sick. We were rushed in to a room to see a doctor straight away. Mia was that poorly she had gone a purplish colour from head to toe, and she could barely keep her eyes open. This time they weighed her, and I have never seen the colour drain out of someone so fast. The doctor went literally as white as a sheet of paper, and rushed out of the room. It turned out that Mia had lost over 1.5lbs in weight in a week. Now they started taking us seriously.
Luckily someone in Allen’s family had had Pyloric Stenosis, so he knew the symptoms and he basically had to tell the Doctor that day that Mia had this condition. We got put in to our own room again, and this time they gave Mia a “test feed” which is basically we had to feed her and they look at her stomach for a ripple across it after her feed, so we gave her her bottle and she projectile vomited it straight back up again – all over the doctor! They diagnosed Mia with Pyloric Stenosis then and there, and the next thing I knew she was on the hospital bed, getting tubes put in her and we were told that we would be getting an ambulance over to the Royal Victoria Infirmary (RVI) for her operation that night.
The first was a nasogastric tube which is passed up the nose, down the food-pipe and in to the stomach. This was to drain her stomach of all contents. She also had to have a cannula in her hand and as she was dehydrated and was put on a drip, and this ensured that her blood had the right balance of minerals and salts before she had her operation – the would only be carried out once her blood tests were normal.
So now it was just a waiting game, waiting for the ambulance to take us over to the RVI for her operation. It was absolute agony seeing her in pain and discomfort and she was always constantly trying to pull the tubes out of her nose and hands. We were given a kiddies plaster to help keep the tube in her nose and the nurses kindly wrapped up her hand so that she couldn’t get the cannula out herself. Unfortunately we were told that we wouldn’t actually be going to the RVI that day because there was no units available to take us down. In the room we were in there was an armchair that pulled out in to a sofa type bed, so we took it in turns to attempt to get some sleep but neither of us slept much, or at all that night. Plus Mia was under hourly observation so even if we did sleep we would be woken up every hour.
The next morning came, and we were still no further to getting transferred to the RVI. We were tired, ratty, stressed, exhausted and it just added to the list of emotions that we were both feeling. We felt completely helpless. Every time her stomach was drained she cried in discomfort. I just wanted to pick her up and take the pain away. We could hardly pick her up because of all of the tubes and machines that she was tied up to so we could hardly comfort her. We made her a makeshift pod made of towels with a blanket over it so she felt safe. We just wanted to do everything we could to make sure she was as comfortable as she could be. We couldn’t even change her nappy without having to take the wires and machines with us.
It got to about 9pm that night, and we were so fed up. We hadn’t heard from anyone about when we would be getting transferred so eventually Allen went to have a “quiet word” with the doctor, and the next thing we knew we were told we were being blue lighted to the RVI. Within 30 minutes the paramedics were in the room getting us ready to go. I had to get on to the bed and hold Mia, being wheeled through the hospital with everyone staring at us! It is the first time I had ever been in an ambulance, and I hope it’s the last.
We got to the RVI and we were taken up to Ward 9 at the RVI which is a specialist surgical inpatient ward. We were given our own room but when we were settled, we were told that Allen wouldn’t be able to stay. It was about 11pm by the time we had got to the RVI so they said on this occasion he could stay for one night but after that night he would have to go home!
The road to recovery was nowhere near short. Although the operation was a success, babies can still be sick after they’ve had the operation while they get used to being able to feed again. A few hours after her operation the nurse asked if we wanted to try and feed her, only a small amount and sure enough she brought it back up. We just had to keep trying and persevering. All that night every time she was fed, she was sick. I was devastated that night when Allen had to leave, but in a way it probably did us both the world of good – while Mia was recovering Allen went home to sleep at night and took over from me during the day – the room had a bed in it and a shower so when he came back first thing in the morning I got some sleep and had a shower too.
Even when we had gotten home we were constantly checking her, even when she was asleep for the first few days we took it in turns to just stay awake and watch her. After days of watching her projectile vomit all over herself, to then her having a major operation at just three weeks old it definitely had taken it’s toll on both of us and we were scared not to watch her. I remember the day after we got home, she projectile vomited all over the bed so straight away I was on the phone to the hospital, but they advised that this is normal and can still happen while they get used to feeding and tolerating their milk again.
Day by day our little warrior got stronger and stronger, and had gone from taking no milk at all to taking a full 4 ounce bottle. She was that hungry all of the time we went up to about 5 ounces in a week! Her weight gain after her surgery was slow, but again we were advised that this was normal.
Honestly, when you go through something like this, especially when it involves your child it will never, ever leave you. I have never felt so alone and isolated in my life. When you know that your baby is so poorly but no one listens or believes you. I still think back and look at photos of her (just picking the ones for this blog had me in tears!), but even when Millie was born all I could think about in the back of my head was that I was petrified in case the same thing happened to Millie. I didn’t know if I could do it again! Of course I would, but I just didn’t know how I would have coped. I’ll be honest when she was small Millie was sick quite often and sometimes it was projectile – we did take her to the doctors but they advised us that as she was gaining weight and having normal nappies they didn’t think it was on the radar and to just try and give her a break in-between her bottle.
Looking at her now you wouldn’t be able to think anything was ever wrong with her. She has a tiny scar across her belly button, but if you didn’t know it was there you wouldn’t be able to notice that it. From that three week old baby in the hospital barely tolerating her feed, to a two year old eating machine that would eat mud if we let her! I honestly couldn’t be prouder of my little warrior.