Erika's Story
Colette and Roddy’s beautiful daughter Erika was born by C-section on Friday 1st July 2011. “It had been a rough pregnancy with threatened miscarriages early on”, Colette told us. “Yet it had all been worth it to hold our precious little princess in our arms”.
Early problems
Colette felt that Erika’s breathing was a little funny, and by Sunday morning, a midwife agreed. Erika’s breathing was to be checked regularly from then on. Colette remembers feeling a little more relaxed in the knowledge that it was going to be monitored. That Sunday night, however, everything was to change beyond anything the couple could have imagined.
Sedated with heavy painkillers from the weekend and drifting in and out of sleep and dreams, Colette woke up on Monday morning to find that her baby wasn’t there – Erika had been taken to the neonatal unit the night before. Roddy rushed to hospital. After finding out where Erika had gone, the couple were taken down to the neonatal unit to see her.
“Absolutely nothing can prepare you for anything going wrong with your baby”, Colette told us. She remembers feeling shocked walking into the unit – “All the alarms going off, tiny premature babies fighting for life…and there was our baby, so much bigger than them all”.
A frightening time
Difficult days followed. “They were treating Erika with antibiotics, thinking she had swallowed some amniotic fluid. We were so frustrated not seeing any improvement, and nobody was answering our questions”.
Later that week, a visiting consultant was asked to check Erika. “We were devastated when we were told that our little princess had two holes in her heart. But the specialist said that this still didn’t explain her laboured breathing”. This was how things remained for the family for two painful weeks, until the space was needed for another baby coming to the unit. “We stayed with Erika in one of the family rooms for another couple of days with her off her monitors and oxygen to see if we could go home soon. On 18th July, we were sent home with some follow-up appointments and a DVD on how to resuscitate an infant.”
A diagnosis at last
At their first follow-up appointment, Colette and Roddy finally found out what was causing Erika’s breathing issues. An echocardiogram showed that Erika had Patent Ductus Arteriosus (PDA) – something more common in premature babies, which is why it was not considered before, as Erika was full term.
A plan was made to try to get Erika to grow a little, to hopefully have a catheter procedure through her groin to close the valve. However, with her breathing problems, Erika could only manage very small feeds, and she actually started to lose weight. And so, after the family’s appointment on 1st September, the decision was made to close the valve with full surgery.
Referral to Yorkhill
As Yorkhill in Glasgow was the hospital that specialised in heart surgery, doctors began to make calls to see if a bed was available for her. “We were sent home to await a call to head through to Glasgow”, Colette remembers. “Neither of us can drive, so Roddy’s boss had very kindly offered to take us through whenever we got the call”.
They didn’t have long to wait, as the call came that afternoon. “We threw what we could think of into some bags and set off. When we arrived at Yorkhill it was 6pm. We were set up in private room and told that someone would be in to see us.”
The plan was to try to line/tube feed Erika for a few days to help her gain some weight back. “The tube was put up Erika’s nose and down into her little tummy, and I still hear her scream to this day. But it was all for the best.”
Where to stay in Glasgow?
“One of the nurses said that somewhere (a house?) was closed for the night, but that they’d check for a room first thing in the morning, but for the first night I could sleep on a foldaway bed in the room and Roddy slept on a chair! Our minds were racing from everything the day had dealt us. We hadn’t even thought about where we would sleep! Then we started to worry about finding and paying for a hotel for however long we’d be here.”
The couple were woken up in the morning with the news that a room was available for them at the place the nurse had mentioned – the House. They were to go over at some point that day to be shown around.
“Roddy and I were both shown how to feed Erika. Then we asked where this House was, and off we went – feeling awful leaving Erika, but knowing we had to sort somewhere to sleep for that night.” Having never heard of the House, Colette and Roddy didn’t know what to expect next.
“We were warmly welcomed, shown around and given our keys. We couldn’t believe how lucky we were to have somewhere just a stones’ throw away from the hospital, and top it all off we didn’t have to worry about paying. Our minds were blown”.
Erika’s surgery
Over that weekend, the consultant advised the couple that Erika’s surgery would be going ahead ASAP. They were shown around the ICU to prepare them for what lay ahead.
“On Monday 5th September I carried Erika in my arms down to the theatre accompanied by a ward nurse. I cried my eyes out handing her over the anaesthetic team, but I knew it was our only choice to help our tiny baby girl. I headed back up to the ward and Roddy and I were told to head over to the House to rest until we had a call.”
“We did some grocery shopping and headed back to our room to try to read, to nap, to eat, but our minds were just elsewhere. Those five and a half hours felt like they lasted a lifetime! Then we got the call to say Erika was out of surgery.”
“We dropped everything and walked as fast as we could back to the hospital. The surgeon told us the opened valve was larger than they thought but it had been successfully closed – but that without the surgery, Erika would not have seen her first birthday. We were also told that when putting all the different equipment in for surgery, a vessel was snagged, and Erika began to bleed and needed a blood transfusion. Our heads were fit to burst with all this information, but we just wanted to see our baby.”
Colette remembers how hard it was not to hold her, but how relieved the couple were just to see her. “We sat with her for a while, in shock at all the machines around her. Then we eventually gave in to some much-needed sleep.”
Erika’s recovery
The next morning, Colette got a call from the ward to say that Erika was doing remarkably well. She was going to be going back to the ward already!
“Roddy had started feeling ill with a sore chest, so he wasn’t allowed to come over with me. On my way over I bumped into the House Manager. I beamed as I told her about Erika fighting her way back to the ward! She asked where Roddy was and when I explained he was feeling ill, she stepped in to help provide some local GP numbers so he could get seen, which he did that day and started treatment for bronchitis”.
The next day, Erika was taken off her pain relief, and Colette even got to give her a bath! “It was amazing to see how hard she was battling through, and sad for Roddy not being able to see her”. However, the next day the nurses advised it would now be fine for Roddy to come over, so the family was all together once again. Erika went from strength to strength each day. By 10th September, she was discharged, and the family were able to go home.
“We had regular appointments at Edinburgh’s Sick Kids, and after a couple of months they were so pleased with Erika’s progress. There was still a small murmur, but the smallest of the two holes had almost closed itself and the bigger one had started to close too! After six months we were told that while they wouldn’t fully discharge Erika, they were happy with her progress and that they wouldn’t see her until just before she started school. We began to relax as much as we could and live life as a family of three.”
From three to four!
By the time the family went along to Erika’s pre-school appointment, they were a family of four, as Erika’s little sister Kerin had come along!
At this appointment, the larger hole was still there, but still closing over. The family were asked to return again in five years. “We were there this year for that appointment. The hole still hasn’t fully closed, but they are happy that it will over time and that it isn’t causing Erika any problems”. They will go back in another five years.
Raising vital funds
Colette and Roddy have taken on some wonderful fundraising challenges over the years to help those who helped them. “In the years that followed Erika’s surgery, Roddy has completed 10k races, half and full marathons to raise money for Yorkhill, Edinburgh’s Sick Kids and the House as a thank you for everything done to help us!”
“Supporting the House helps families out when their worlds start falling apart in the most awful ways.”