The staff at Crawford and Scott were always there to listen
Rogan was born at West Cumberland Hospital on 22 December 2016. We had a tricky pregnancy, very different to my previous two children. I didn’t really feel pregnant at all and there was no bump. I had to have scans every couple of weeks because Rogan wasn’t growing as he should have been. Then at 21 weeks the doctor detected a number of cardiac issues and told us our baby was missing his left arm.
We were referred to Newcastle’s Royal Victoria Infirmary (RVI), over 100 miles from home, for specialist scans and, although they told us Rogan’s heart was completely normal, we were entirely on edge. By 34 weeks his growth was slowing down even more and by 36 weeks he had stopped growing altogether. A fortnight passed and Rogan was delivered by caesarean, weighing 5lb 3oz, and it was incredibly traumatic. It took doctors over an hour to free him and we were in theatre for two hours – I was bleeding a lot and my husband, Damian, had a panic attack. It was very scary, but thankfully in the end we were fine.
Rogan was born with a large skin tag on his ear and because this is associated with kidney problems the doctors decided to do extra scans before we were sent home. That’s where they found that his heart was on the wrong side of his body – a rare heart condition known as dextrocardia. They immediately rushed him to the special care baby unit (SCBU) where tests showed Rogan had tachycardia, a rapid heart rate caused by a problem in his heart’s electrical system, and the decision was made to transfer him by ambulance to Freeman Hospital, a specialist paediatric hospital for children with heart conditions also in Newcastle.
At Freeman Hospital we were told Rogan also had coarctation of the aorta (CoA), which meant the main artery leading into his heart was very narrow and so he would need immediate surgery. Our heads were all over the place. It felt like every minute we were told that there was another thing wrong with our son, and that he would need to stay in hospital for the foreseeable future. We were over two hours from home and hadn’t thought about where we would sleep. The nurses told us about Scott House – a ‘Home from Home’ run by The Sick Children’s Trust. But because it was so late at night we didn’t get keys until the next morning. As soon as we received them, Damian went to over to Scott House to settle into our temporary home, but I stayed with Rogan on the ward as I was feeding him.
We were told that Rogan’s surgery would take around four hours. However, due to complications, he was in theatre for the longest 11 hours of my life. We were beside ourselves and then half way though the operation the surgeon came to see us to tell us they couldn’t take him off the heart bypass. Rogan’s aorta had clotted three times, he had experienced no blood flow to his lower organs and legs for 72 minutes. The surgeon said it was likely that if Rogan survived he would come out paralysed from the chest downwards and his organs would then fail. Time stood still and every minute felt like a day as we waited for news; it took all our energy to remain positive and alert.
By some miracle they managed a full rebuild of the aorta and our warrior soldiered on and surprised everyone when he moved his leg 24 hours later – and with a little help his organs began to work just fine. Whilst Rogan recovered from the operation, we stayed at Scott House. It meant the world to us and without Scott House we wouldn’t have had any privacy, normality, nor a comfortable place to sleep, wash and eat.
It was also a place we could have our children, Leigha, four, and Braiden, two, with us whilst being right next to our baby boy if anything happened. They were heartbroken and didn’t understand what was happening during those earliest days – they had never been separated from us. And Scott House allowed them to come over from Cumbria and be with their mam, dad and baby brother.
The staff were all absolutely amazing and always there for you if you needed something or just someone to talk to or listen – for this we will be forever grateful because most people didn’t really know what to say to us.
When Rogan was a month old he took a turn for the worst and needed a tracheostomy. It was decided he would be transferred one day post operation to the RVI, but we didn’t have time to worry about accommodation as Andrew was already on the case finding us a room at Crawford House, the charity’s other ‘Home from Home’ in Newcastle.
When we were told there was a room for us in another house run by The Sick Children’s Trust at the RVI, which meant we could be with our baby all day long, we were beyond grateful. We never knew The Sick Children’s Trust even existed before we had Rogan and now we depended on them. That’s why we made a promise to do some fundraising once we got home to help other families like ours whose lives got turned upside down in a split second. We finally got our beautiful boy home at six months old and he’s amazing. Rogan just smiles all day long and absolutely loves playing with his big brother and sister.
He has VACTERL association, an acronym made up of the first letters of the main symptoms that make up his condition: vertebral defects, anorectal anomalies, cardiac defects, tracheo-oesphageal fistula/oesophageal atresia, renal abnormalities and limb abnormalities. Rogan will always be in and out of hospital and we have been admitted back into PICU and the RVI twice since getting home and been back a number of times for respiratory infections and once for a gastrostomy tube. Rogan is completely non-oral, which means he can’t eat normally and he has three monthly admissions to have his metal stent stretched under general anaesthetic, which helps widen his gastrointestinal tract so he can be tube fed.
Damian and I had to do intensive training to get Rogan home and we can’t ever leave him on his own. We received the training at the RVI and because we were staying at Crawford House we were right there and could be involved in his treatment and hands on at all times. This definitely made the difference between Rogan being kept in hospital longer before he was discharged home, as he needs specialist treatment and I am his full time carer. Staying at Scott House meant we were right next to the hospital. Whenever we get an admission to the RVI we go over to Crawford House to say hello and if we can take Rogan out of hospital, we take him over there with us. The staff at Crawford House were with us through the hardest of times and felt like family in the end and we won’t ever forget any of them.
This year we are making Christmas extra special, as last year we were in hospital. We’ve bought a huge tree and plan to spend the whole day with family and friends enjoying every minute of it and spoiling all three of our amazing kids. It has been a hard year for all of us and we deserve it!
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