Hi, I’m not sure where to begin so I will start with introducing myself. I am William and my wife is Ruth. We have three children, Eoin who is eleven, Finlay who is ten and Oliver who is two.
Our first child Eoin was born in May 2005 and we were told that he had a heart murmur. I was devastated. After months of testing it was concluded that it was nothing to worry about. We found out that we had another child on the way on Eoin’s first birthday in May 2006 and we were over the moon again.
The first scan came and went with eyebrows raised by the medical team who hinted that something may be wrong, but they told us not to worry. We we went back for a second scan and saw a consultant who said an ‘anomaly had been found’ so we were sent to Royal Edinburgh Hospital for a second opinion and another scan. It was a longer scan and confirmed that there was in fact an anomaly. The anomaly was with his development and they thought that his heart may be on the wrong side, but no other issues were noticed and we were told that we could end the pregnancy if we wished. As we have always had the view that ‘life is life’ as soon as there is a heartbeat, and where there is life there is hope, our view was that life deserves a chance. We were offered further tests until around week 30. By that time in the pregnancy, it would be too late if we wished to end it. By this time we had been on a roller coaster of events and decided to let what was to happen, happen.
It was Christmas 2006 when Ruth started to feel contractions and the excitement of a possible Christmas baby created high hopes, but they were dashed with no appearance of our baby. We had a daily run backwards and forwards to the hospital and the labour ward until New Year’s Eve when again it looked like he was going arrive. New Year came and went and again and still there was no baby.
Along he came on a stormy windy day on 3 January 2017. The bridge to Edinburgh was closed due to strong winds. Baby Barker, as he was known, was born at 12.30pm just three days outside his due date. His birth weight was 7 pounds, 13.5 ounces and he was 53cm long. He looked like a normal baby – ten fingers and toes, and everything looked fine. There was a hint of blonde hair and blue eyes. Whatever was wrong, he had made it, and we had indeed made the first of many steps.
Ruth was exhausted and required some surgery following the birth. I recall cradling our baby, feeling proud that we had another child. He looked perfect wrapped in towels with a little nappy on and I felt grateful he was here, but something did not seem right. He seemed to struggle with regulating his body temperature at first.
After a while, it was time for the first feed and he appeared to be suckling well, but it did not seem to be going down. I kept trying until I noticed him change colour. He seemed to be going blue but it was hard to tell (I remember the light in the room being very poor).
I recall asking the midwife to check him over and he was grabbed from my arms and taken to a room that I was not allowed to enter.
I paced the floor anxiously. A few hours later it was time for the second feed and we had been moved from the labour suit to a hospital cubicle to await Ruth’s arrival back from theatre. When we fed him the second time, he went blue again and was taken to resuscitation. This time we went for an x-ray and he was moved to the neonatal unit. He looked huge and so out of place among the other babies, but he still struggled to feed.
We started to hear words like ‘failure to thrive’ and it started to get scary.
Ruth was put on the ward beside other mums who had their newborn babies beside them. After a few days Ruth was given a side room and after spending a few days there, Baby Barker, as he was still called, was transferred to Sick Kids in Edinburgh by ambulance.
He spent a few days on ward one and was discharged as they had no answers for us. I remain to be convinced that he was actually sent home to die. We had been sent home with an appointment to come back a few days later – a check-up and spent a few days at home with daily visits from the health visitor.
We had planned to register him as a family but the weather had been so cold and he did not seem to cope well with it so we delayed going out. Eventually we went out of the house when it got a little warmer. We had a walk down-town and we meet a few friends – one a midwife who looked in the pram. Their faces showed concern but they did not say anything. The health visitor came the next day and said ‘he’s doing great’. Later that day he had a check up at Sick Kids. They weighed him as the health visitor had been doing every day and plotted his weight and height as they normally do. The doctor had examined him and he was taken straight to the ward as he had lost a lot of weight and was digging in at the chest and appeared to be struggling to breathe. None of this had been spotted by the health visitor despite us highlighting the oddness in his breathing as it appeared one sided and he seemed to shake. We found ourselves back on ward one and we were told to expect the worst. It felt like being hit by a bus. He looked perfect what could be wrong? No one seemed to know. He was nicknamed the ‘conundrum’.
He remained ‘Baby Barker’ for some time as I found it hard to give him a name. I guess in case we lost him. As silly as it may sound, it perhaps seemed easier to lose something without a name.
It was soon the last day to register him and I went to the registrars’ and we called him Finlay, as we had read in a baby book that it meant ‘fair haired warrior’ and by now it seemed appropriate.
While on the ward we met different parents and children but one in particular stuck out. Every day a young child around two years old would shuffle along on his bottom. He would smile and look at us and would sign to us. It was Luuk. We started to talk his mum Sharon, who was a source of light and support in the darkness. We learned a lot from Sharon. She taught us how to fight and speak up. We started to get bombarded with possible conditions and outcomes and medical terms we know nothing at all about. Life for us became split with Ruth staying at hospital with Finlay (I recall the health visitor saying ‘ Ruth should be at home with Eoin’ but she was also told that she also needed to be with Finlay in case he passed. I went home with Eoin and I was failing terribly at it. I was now back at work and trying to balance a full working day and family (Eoin who was eighteen months) and of course Ruth and Finlay needed support.
My GP refused to sign me off as I was not ill. I was trying to balance working full time twelve hour days plus fit in things at night to catch up on the day’s events and weekend visits to hospital along with trying to look after the house and do the washing shopping etc. I learned early doors that something was going to have to give so Eoin and I ended up at my mum’s because we needed help.
Days were long starting at 6am with me sometimes getting to bed at 2am - most nights I wasn’t sleeping after coming back to check the house and emails, google the medical expression of that day and update people on daily events (these were the days before social media and SWAN UK for support and advice).
Finlay was moved up to the High Dependency Unit and put on a positive airway pressure ventilator (CPAP) and nasogastric tube (NG tube). We discovered his thyroid was not working as it should and we started to learn how to feed him through the tube. We started to learn how to pass NG feeding tubes and understand the alarms he was connected too and how to give him his medicines that helped.
We kept wondering what was going happen next and had daily debates with professionals from respiratory and cardiology about what was wrong.
We found that there was a large ASD and VSD and it was confirmed that heart surgery was required. At one point I had Finlay in ITU doing his thing and Eoin in HDU with croup. There were good days and bad and a rollercoaster of emotions most nights driving home with tears rolling down my face.
The days passed; January become February and February led to March. They all passed in a blur. Every night we would hope for just another day and for Finlay to gain a few pounds, while all the time watching the world go by outside the window.
April 2007 came and we were told that he was being moved to Yorkhill Children’s Hospital at short notice as a slot had become available for his heart operation. He was to travel in an ambulance alone once again and we were not allowed to travel with him and told to make our own way to the hospital, but we weren’t given the address. We were already tense as Ruth’s sister had passed away at Yorkhill Hospital a number of years before. The handover from Edinburgh to Glasgow was a mess. He was not on CPAP and Yorkhill believed it was not required. Anyway, after a few false alarm his time came for the operation at 3pm on Friday 7 April 2007. It was Easter weekend. He had fasted the night before and we read ‘Guess how much I Love you’ as we would at any other night. He was prepped and we went down to the theatre with him. Of course we were both concerned as the risks were high due to location and rotation of the heart. After the operation he was out for a few days and day by day, gradually the sedition medication and wires and alarms were reduced and we could have more interaction. After a few days he was back on the ward and after about a week the time came to go home.
He came home and was pump fed, and we had a nurse to support us with any pump feeding issues. He was tube feed on high energy milk to help with the weight gain and had reflux issues. He came home with various medications and we developed a routine and pattern to give him the medication. We wanted him to go to nursery like his brother and had to train the nursery nurses how to bolus feed him as the nurse would not. At around nine months old he pulled the tube out and started drinking from the bottle without getting tired. We had frequent visits to our local hospital every time he had breathing issues and infections, and as he has got older and bigger hospital stays have become less frequent.
Finlay is now ten years old and his mile stones seem to have been delayed - things like his movement were more clumsy and his behaviour is now is not helped with ADHD. I guess his biggest achievement is that he never gives in, but will try anything and give it his best.
As we had always wanted a big family we plucked up the courage to try again and in 2013 we eventually decided that we would try for another child. The pregnancy started but failed early on, however, the following month we found out that again we were expecting and in May 2014 Oliver was born.
Ten years on we do not have any diagnosis or any answers, but we do have a child that is unique and loved by us. Would we change our decision … I would not. We perhaps would have tried earlier rather than having the seven year gap between Finlay and Oliver. Naturally, we still have concerns over what the future holds but with fewer hospital stays we are a little more assured.
We still have no name for Finlay’s condition. He has been described as having elements of different syndromes but no clear syndrome. We have taken part in the Deciphering Developmental Disorders (DDD) study but have no results as yet.
We know he does not have Cystic Fibrosis or Primary Cilia Dyskinesia. We do know his heart is positioned on the right, he has a small right lung that has weird plumbing and also has pseudo scimitar syndrome, ADHD and Dyslexia. In some ways we are lucky.
We found SWAN UK by accident. A few years ago we were on holiday at Haven Holiday parks in Yorkshire. There was a Scottish family whose daughter had been dancing as part of a talent contest and we discovered they stayed in the next town to us. We got talking and we noticed that one of the children used a wheelchair and the mum was wearing a SWAN UK tshirt. Being curious, I asked what SWAN UK was. I explained our story and we contacted to SWAN UK and joined.
I love the SWAN UK network. The support in the Facebook groups is good (if only we had that in 2007) and somebody usually has some form of knowledge or experience. It is amazing how supportive the group is both with people sharing good news and of course sad news. It is always sad reading about a swan passing and there is nothing better than reading that someone has got answers.
For us the search for answers continues …