-Our story by Sophie Walker-
I was sitting in the waiting room at Queens hospital Burton, I’d just had yet another growth scan but because there was more fluid around baby and the baby was measuring big I was told I needed to speak to a consultant. Max, my first born was born 8 days late and weighed 7Ib 6oz, and this one was measuring at 9Ib 6oz a week before his due date! I started to panic and because of the concern from myself and the consultants they decided to induce me on babies due date, 05/11/19.
The day arrived, I was excited and nervous. Before going into hospital myself and my husband Chris took our very excited son Max, to school. I remember him telling his friends and his teacher as he was going into school that he was going have a baby brother that day. After taking him to school we went off to the hospital and I was induced. Not a pleasant experience and not one I had experienced before as I went into labour naturally with Max. Little did I know we was in for a long wait! Little man was far too comfy in there and sitting very high up!
Nothing was happening, it then got to the next morning and I was given the go ahead and got took to delivery suite. Things started happening quite quickly, I was going along nicely with gas and air and I can remember the pain got quite bad at 5.25pm, I asked for pethidine but it was too late and at 5.35pm Rowan Christoper Walker arrived into the world, weighing 8Ib 7oz! He was perfect! The next day we were able to go home and start our lives together as a family of four.
Rowan was doing really well being at home and fitted into our family perfectly! Max was the best big brother and absolutely adored Rowan. We then took Rowan for his first midwife appointment and everything went well, however they had said he had lost 7% of his body weight. They said this was normal and there was no concerns as he was feeding well and still having wet nappies. They said by the time they see him next he should have put weight on. I wasn’t concerned as in my eyes he was doing everything a newborn baby would do.
We then took him back for his second midwife appointment a week later and everything was fine but then they weighed him again and he had now lost 11% of his body weight, which they were a little concerned about. They called the hospital, told me not to worry and to take Rowan back for them to check him over. So off we went back to hospital. I thought they would check Rowan over and send him home with some hungry milk to make him put weight on.
How wrong I was!
When we got to hospital we were met by a lovey consultant, Dr Sheehan, he was amazing! We were at the hospital for a long time and Rowan had bloods taken. We were then told they needed to do more tests and that we had to stay in! I started to panic and was asking what was wrong but they couldn’t tell us anything until more tests were done.
We were taken to the ward. Rowan then had to have a cannula inserted so they could take bloods as and when needed. He was also hooked up to a monitor and had to have a temperature wrap attached to his foot so he could be continuously monitored. I was so scared and I was also on my own, Chris had to stay home with Max. What was happening to our tiny baby?! He was brand new and everything was perfect 12 hours ago and then we was in hospital, didn’t know what was happening and he was hooked up to these machines. We didn’t know at this point but this was the beginning of a 5 day stay!
At 1.30am a doctor came to speak to me, He sat on the end of the bed and asked me a few questions and then told me that Rowan had been diagnosed with a rare genetic condition called Congenital Adrenal Hyperplasia (CAH). CAH is a genetic disorder causing impaired hormone production from the adrenal glands that sit on top of the kidneys. Therefore, Rowan does not produce the Cortisol, Aldosterone or Androgen hormones and will be on hormone replacement therapy for the rest of his life.
The cortisol hormone is typically produced at times of physical stress such as infection or inflammation when your body is trying to protect you from illness. The Aldosterone hormone typically helps regulate the salt levels in the body and the Androgen hormones typically are sex related hormones which regulate body growth and pubertal growth.
I had never heard of this condition before. I was trying hard to listen to the doctor as he was telling me about the condition but it didn’t seem to be sinking in. I did pick up on a sentence he said which was “this condition can be life threatening” and my eyes filled with tears. No parent ever wants to hear that. He then said that Rowan was very lucky that he came in at the time he did because his hormone levels were all dangerously unbalanced. As they were so unbalanced his body had gone into something called adrenal crisis. He assured me that we were in the best place to get him sorted and that over the next few days he will be having more tests and medication to try and determine what levels of medication his little body will need to help him. The doctor then reassured me once more that Rowan was in the best place before leaving the room. At that moment I felt crushed and spent the rest of night watching over him. I must have drifted off because the next thing I knew it was morning.
The next four days were long! Rowan had to have ECG’s and more blood tests. He was like a pin cushion from all the blood tests and cannulas that he had to have and he had to have a scan on his kidneys to make sure his kidneys were ok and not enlarged due to the crisis. He was also seen and we was spoken to by a number of consultants too. Now Rowan had been diagnosed we had to learn what medication he had to take and how to administer it. We also had to learn how to administer his medicine if he was poorly as his dose increases and also learn how to inject him if his body was to go into adrenal crisis again. It was scary and so worrying, after all he was brand new, we were still bonding and getting to know each other. How was I going to know if he would be poorly again with him being so small!? The doctors, family and friends all said you will just know but I wasn’t convinced, I am a massive worrier!
A whole load of questions went through my mind, so many that I had to write them all down. I asked the questions and learnt how to mix and give Rowan’s medication. Once we were confident, we were told we would be going home. It was so scary but we had so much support from hospital, community nurses and Rowan's consultants from Birmingham children’s and Burton hospitals. Going home this time was the start of yet another journey with Rowan, one that made him even more unique than he was before.
Our baby was a real life Superhero, after all, Superheroes are rare too!
We are now 8 months on and Rowan is doing just fine. He’s meeting all his milestones within his development and he has the cheekiest most infectious smile! Rowan is now used to taking his medicine throughout the day and is thriving and putting on weight at a normal rate. Rowan is still closely monitored by his consultants and we have to have regular visits to the hospital for check ups and bloods to be taken which isn’t nice but it’s got to be done and will continue throughout the rest of his life. He will just get used to having them I guess! As for us, we are still learning too. Each time Rowan has a set back we learn something new and we will continue to do so as he gets older and his body changes.
Alone we are strong….
Together we are stronger…. Always!
Thank you for taking the time to read my blog. Rowan’s condition is just one of thousands of rare genetic conditions out there and between Monday 14th and Sunday 20th of September, we will be making a donation and wearing our jeans to support the annual fundraising event 'Jeans for genes.' The money raised helps support children who are affected by genetic disorders. If you would like to get involved too, please click on the link below to learn more…
