It’s been three years since we discovered Emily had a congenital heart defect. After years of trying and then the delight of discovering we were having twins, our twelve week scan brought us crashing down. If the infertility hadn’t already robbed most of the joy of pregnancy, the remaining scraps evaporated when our sonographer went very quiet and then left the room.
Shortly after we were taken into a little room with sofas and tissues and bland artwork. We knew bad news was coming but just had to hope it wasn’t too bad. I guess the medical profession are stuck between a rock and a hard place. They need to give you all the information but from a scan can’t actually tell you all that much. For us we were given a worst case scenario but told it might not happen.
Twin two, now known as Emily, was small and showed other signs of tetralogy of fallot. A condition where there are four separate heart defects which results in low oxygenation of blood due to the mixing of oxygenated and deoxygenated blood. This was the best possible outcome. Surgery would be essential. We were also told these defects could indicate various chromosomal abnormalities, some of which are fatal soon after birth.
Leaving that consultation was devastating. The cruel twist was that we likely wouldn’t know much more until after they were born unless we were prepared to investigate and risk miscarriage. For us, this wasn’t an option. However hard the wait would be, I couldn’t justify the test just to prepare myself. We waited.
Add a heart condition to a high risk twin pregnancy and you get watched a lot. I don’t think I went more than a fortnight without an appointment and this increased to weekly by the end of my second trimester. She grew but slower than twin one and still we didn’t know much. I daren’t get too excited. Baby purchases were kept to a minimum. The thought of buying a cot that might not get used was too much so we just didn’t.
The combination of breech and transverse twins and this extra complication led my consultant to recommend a planned c-section. I was disappointed but really I was also grateful the decision was pretty much taken out of my hands. We were prepared that she may be born blue and the theatre was full of so many amazing specialists.
On the day, I was strangely calm. We had to wait until there were two PICU beds available, just in case. Finally it was time. Twin one was born and placed close to me but twin two wasn’t. I’m not sure for how long but I knew Stu was right there with her. He kept coming back to reassure me and he got to hold her first. This picture is one of my favourites.
After I was sewn up, we were wheeled to recovery and I was able to hold my second tiny girl. At 4lb 4oz she felt so incredibly tiny but looked pink and perfect. We were allowed to take the girls home after two days. All seemed well but would need confirming with a scan at another hospital on the way.
It was deemed that she was healthy enough to go home but that she’d need monitoring as she could go blue. We had monthly check ups and were told to avoid socialising to minimise the risk of her getting an infection. The plan was that by six month she should be strong enough and big enough to face the surgery to correct the defects.
Sure enough she was and we were lucky not to have any blue episodes. By the time the surgery came around, the consensus from various consultants was that in fact she just simply had a hole in the heart. For us, this was by far the best diagnosis we could have hoped for and a million miles better than what we’d been prepared for.
Watching our tiny one be put under with a mask is not something I think I’ll ever forget but I had so much faith in the team. The hours crept by and early in the evening we were told we could see her. The tubes, wires, beeping and monitors were distressing but under it all was our Emily smiling up at us. The care she received was exceptional and what I’d imagine if you were in a private hospital. Each bed had a specialist nurse sat at the end watching and monitoring the patient 24hrs a day.
Knowing our baby was in such good hands, helped me so much. Amazingly, we were given a room where we could stay for the entirety of Emily’s stay. There was a kitchen and lounge room. Having these facilities made the incredibly difficult time that little easier. Being able to have our family together was priceless and I’ll be forever grateful to the Heartlink charity that made this possible.
The operation was a complete success and Emily made an amazing recovery. Looking at her now, you’d never guess she is a heart warrior unless you caught a glimpse of her scar. I don’t even consider covering it. Recently, she has started to notice this special mark but then quickly forgets about it again. I hope she’s never embarrassed by it and is proud of the battle she fought.
She’ll always have her heart condition but there should be no long lasting affects. Her annual checks are now a chance to see all the lovely staff who cared for her in those first few weeks and months. They met my girls at two days old and now they’re toddlers. It makes me so sad that there are plans to close such an amazing place. How incredibly lucky we’ve been to benefit from such first rate care. Our NHS experience was amazing.
What are you grateful to the NHS for?