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Rowan's Story

Last Reviewed 02/09/2016

By SWAN UK Member

I will try to condense his story as much as possible! Rowan was born in April 2009, after a fairly uneventful pregnancy. He was however not a straight forward delivery in that he was born at home, expectedly, in the bathroom, weighing a very healthy 6lb 14oz. Despite being told I was expecting a girl, he quite clearly is not a girl (although with his obsession with nail polish, shoes, and hair, I still wonder).

I should have known from then he was going to be trouble. We were taken to hospital in an ambulance in the early hours of the morning because he was very cold, despite being bright red. This was how he got his name. As for a couple of days, he had no name. Rowan means little red one.

The first few weeks seemed ok-ish. He wouldn’t really feed very much and being breastfed, it wasn’t until the health visitor asked me how often he was feeding that I realised he slept more than he fed. Then, at six weeks old the fun began. At his six week check they realised he had hardly gained any weight since birth. He was referred to a paediatrician and started on formula to fatten him up. From there, our journey with yet another gastro baby began. I had been here before with his brothers Cameron and Ayden and at the time, I thought he was just another complex coeliac child. I couldn’t have been more wrong.

In Rowan’s first year he spent more time in hospital than at home. We tried feeding him with a nasogastric (NG) tube for a bit. We swapped from one formula to another and back again, changing the formulations – more calories, less calories, dairy, dairy-free, hypoallergenic, you name it we probably tried it. They put a NG tube in (a tube that goes through his nose, into his tummy) and tried feeding him that way. Rowan had all the usual tests, cystic fibrosis, ultrasounds, X-rays, blood tests. Nothing was helping. Eventually Rowan was referred to Great Ormond Street Hospital for Children (GOSH) after a HUGE battle, (the other two boys were already seeing a gastroenterologist at GOSH).

Once at GOSH, the real stuff began. They re-did all the tests and did a few more, he had scopes and biopsies. It was at this point we realised that he did not have the same condition as the other two boys. There was something else going on here, we just didn’t know what. Rowan didn’t gain weight whether he was in the hospital, or whether he was at home, whether he was breast fed, bottle fed, or NG tube fed. Great Ormond Street then decided to put an NJ tube in which is a nasojejunal tube that goes through his nose, through his stomach, out the other side into his small bowel bypassing the stomach completely. He was then connected to a feeding pump and fed very slowly, all day, every day. There were a few problems that had to be overcome with this, the first being that where we live, children cannot have overnight feeds down a ‘naso-tube’ for health and safety reasons. (It’s a postcode lottery this ‘rule’.) Therefore, Rowan spent a year, pretty much sleeping at the hospital every night, either on HDU, or with a one to one nurse watching his every move. By this time Rowan was still only 8lb but he was feisty and constantly pulled out this tube. This tube is not easy to replace and requires an X-ray. Rowan got to the point where he could not have any more X-rays. It also took time to get used to him being connected to a machine.

Rowan was then referred to the surgeons at GOSH to have this NJ tube put into him surgically. Usually they like to fit what is called a GJ tube at this point, so you have one tube into the tummy and one into the small bowel but only one ‘device’ on the outside. However, for this he needed to weigh nearly 10kg and he was nowhere near that! (He didn’t even weigh half of that). So they tried to wait as long as possible before doing the surgery but with the tube out more than it was in some days, they decided to do a more complex procedure called a roux en y jejunostomy. This is where they move parts of the intestines and bowel around a bit to put the tube in directly. Just after Rowan’s first birthday (which was spent in hospital), we went to GOSH and he underwent an eight hour surgery to have the tube put in. During surgery they knocked his bowel out and therefore could not be fed. The 3 to 4 day hospital stay turned into a 14 day stay but at the end of it, I took my baby home and he slept at home for the first time in a really long time. Everyone believed this would help, it would work and everything would be fine. It wasn’t.

Testing showed that Rowan’s bloods levels were all over the place, including cortisol, thyroid, blood sugars, growth hormone and he suffered from lots of endocrine problems. However, it was difficult to know if this was because of his size or the cause of his size. When the body is in a ‘starvation state’ lots of these things go crazy, so there was an endocrine referral made at GOSH, on the back burner. As time went on, we tried every single formulation of milk, all over again. Different quantities of feeds, different rates on the feeding pump, breaks off the feeding pump and medications to help with reflux. You name it we tried it, all over again.

At the age of 18 months Rowan was admitted to GOSH, for a very extensive stay in order to start TPN. I fought this for months and it took for a consultant to tell me that “it’s that, or you lose him” for me to say ok.

I didn’t want him on TPN, I knew what the risks were and I just didn’t want it for my baby. But when the consultant said that to me, I knew we had tried absolutely everything else and it was now unavoidable. On admission Rowan was weighed. At 18 months old, he weighed just 9lb 12oz. On the 5th November 2010 Rowan started on TPN, it was meant to be a quicker process than it was. It took months, we tried him on it, off it, on it with milk, just milk, just TPN, different formulations of TPN, different combinations of formulas and TPN, but he still didn’t really grow. So they increased his calories in his TPN, over and over, until we got to a shocking amount of calories. He was consuming over 4000 calories a day and slowly, slowly he started to grow. It was working. I was overjoyed.

For those that don’t know what TPN is (why would you? I didn’t), it stands for total parenteral nutrition. It is all the vitamins, minerals and fats that the body needs to grow, develop and sustain life, only, it is given intravenously. Rowan has a hickman line that goes into his heart, comes out on his chest and is run through another pump. There are some pretty big risks with TPN. One is that it is very hard on the liver and can cause huge problems, with liver failure being the end result. The other huge risk is infection. Because of where the hickman line goes into his heart, if he gets an infection, it’s spread around the body in a matter of minutes, and can be fatal. Despite these risks, it helps Rowan. He has had three line infections to date.

The spiral is a hickman line,next one down is gastrostomy, bottom one is jejunostomy

After establishing that Rowan needed TPN, the endocrine doctors came to have a look at him now that his body was not in a starvation state. Rowan had hypoglycaemia. His blood sugar drops to dangerous levels if he does not have a ridiculous amount of sugar constantly fed into him. He also has growth hormone deficiency. He does not produce close to enough of the hormone that you need to grow. Therefore he has twice daily injections to replace this hormone. He also has hypothyroidism. His thyroid is under active and he needs thyroxine to help this out. Rowan also developed hyperphagia, obsessive compulsive eating. He would eat everything in sight and then some more.

Despite all this, he was growing. At the age of 22 months he learnt to bum shuffle on the hospital ward. I was beside myself.

It was at this point that a physio and an Occupational Therapist became involved. It turns out that Rowan was extremely hypermobile, which is quite common amongst children with gastro problems. Rowan started physiotherapy to try and strengthen those muscles. The OT prescribed chairs for him to sit in. He needed a specialist cot at home so he could be on an incline to help his reflux. He needed a bath chair, as he was still not very stable in the bath. He also needed specialist boots to help his weak ankles and encourage him to stand (bum shuffling is not great for the hips of hypermobile children).

Despite all this I was happy he was growing and finally developing. He was getting a huge personality and captured the hearts of everyone who spent time with him (in fact, he still does). After two weeks of training in how to connect and disconnect Rowan’s TPN safely, we came home. It turned our lives upside down. He struggled to adjust, he was institutionalised. I struggled to adjust. In time though, we got there. It was a terrifying experience. No one in our county was at home on TPN. The local hospital also didn’t really understand home TPN. It took a lot of fighting, a lot of stress and a lot of tears but we made it work. Over the next year Rowan learnt to be a little boy. He had to fight some very big battles, from selective mutism to learning how to play. He learnt to sign. He learnt to walk literally just before his 3rd birthday. We started to reduce his TPN as he started to get a little bit too chubby as he ate more and more and more.

Now that Rowan was becoming more stable I was keen to find out more about what was going on with his body. Why did he need TPN (which is usually used for intestinal failure)? Why was he eating so much? Why was he needing so many calories, yet was still so small? We underwent every single test going, from blood tests, to MRI scans, to genetics testing, to biopsies, liver biopsies, heart scans. You name it, he had it. Everything was normal. After months of admissions here and there we decided to just carry on as we were reducing the TPN, with a view to getting him off of it.

Rowan started nursery and then started school. He was hit with a few bugs that made him very very poorly and he had to be admitted to hospital but on the whole, the juggling act was working for us. Then the pain really started to set in. His legs would hurt, then his back. He would be screaming in pain for hours. There is nothing more heartbreaking than seeing your child in pain, especially not knowing why. It turns out it’s all to do with his muscles and them being very weak. Rowan uses a wheelchair on a daily basis, he just has no stamina to do anything and being in the wheelchair means that he can still access everything a little boy can. He can still learn and play and be in less pain. Rowan has chronic pain. He will always be in pain, some days are worse than others but we do what we can, he is determined to live his life! The stomach pain was due to trapped wind that he just couldn’t get rid of and a build up of gastric fluid, so they surgically put a tube into his tummy so all that excess can drain out. This tube is a gastrostomy (you can feed into these too, as well as drain things off but Rowan isn’t fed this way). This drastically reduced his tummy pains.

In September of 2013 we agreed to undertake an ADM. We needed to be able to understand what was going on with Rowan’s digestive system. We got stuck with reducing his TPN and we weren’t sure why. We needed to know if there was something we could do, to continue the plan to wean Rowan off of TPN, so we were admitted to GOSH. It would be a three day stay. They would insert a probe down Rowan’s nose, through his stomach and out the other side. This probe would then be attached to a big machine for a long stretch of time and it would measure the muscles and the signals that are sent throughout the digestive system or something like that. I’m not 100% sure because we didn’t get that far. They couldn’t get the probe in.

While they were trying to get the probe in, there had been an error made. Rowan’s stomach had been pulled away from the abdominal wall. This caused no end of issues. He was rushed to theatre, emergency surgery at midnight. It was terrifying for both me and him. At this time we had no real idea what was wrong. The surgeons just needed to get in there and see what was wrong and fix it. That they did. A three day stay, turned into 32. He was hooked up to ketamine and morphine. He had a reaction to ketamine, meaning he can no longer have that. He then started spiking temperatures. He had peritonitis which he needed antibiotics for. He then had an allergic reaction to one of the antibiotics, he wasn’t recovering very well. Then they tried to feed him again and it was a disaster. He experienced pain and was vomiting. Then the milk they tried started pouring out of his gastrostomy, it was refluxing back up. So they gave up with feed. They trained me on some extra pain relief and sent us home, unfeedable and on 24 hour TPN. They hoped that with a bit of gut rest, he would be back to eating again.

Almost a year on, Rowan has tried to be fed (in hospital) on a number of occasions and it hasn’t worked. A tiny amount causes a lot of pain. Rowan is still on all the pain relief and doses of lots of his medications have increased. He is on over double the amount of TPN and has lost 4kg in weight (it’s ok though, he did have some to lose!). He is now in proportion but not growing again. He can only really eat lollies without being in pain. He is in even more pain. He has had another line infection due to constant access and bugs that go from the tummy into the blood stream. On paper, he has it pretty rough but in reality…..he is still (on the whole) a determined, feisty, smiley and happy little five year old boy, who is starting year one in September. Cognitively there is nothing wrong with him. He only manages half days at school before the pain and fatigue engulf him but he makes the most of what he has. He has friends, he has a social life. He loves baking. He loves having his nails painted. He loves music (and thoroughly enjoyed Camp Bestival this year!) He is reading, writing and living his life to the full, while being connected to a bag that drains out his stomach contents and a huge backpack delivering IV nutrition every minute of every day but he doesn’t let it stop him. We have been camping, on days out, swimming, geo-caching and to the park. Rowan isn’t a child who says ‘I can’t do that’….he is a child who asks ‘how can I do that’. He is determined to live his life as much like every other five year old does and I am there to help him do that, whatever it takes.

Rowan has lots more hospital admissions to look forward to. He has many more tests to go through.

We don’t know what’s around the corner, he went from doing fantastically well to not so well in a matter of hours. He is stable right now and that’s what is important. While we do not know what Rowan has, he certainly has a lot of personality to make up for it. We don’t know what the future holds for Rowan. For now, we live life one day at a time, giving him all the childhood experiences he deserves just like his siblings. We may never get a diagnosis for Rowan. Some days that bothers me, other days it doesn’t so much. We can only focus on now and making sure Rowan is as healthy as can be and as happy as can be. (Unless he is in time out, then his happiness is not so important, time out is!)

We're always looking for stories - if you'd like to share yours drop us an email: info@undiagnosed.org.uk.

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