Iolan was born the Transposition the Great Arteries, Pulmonary Stenosis, Sub-Pulmonary Stenosis and a Bicuspid Pulmonary Valve.
Everyday my 2 year old son Iolan amazes me. He’s always singing and dancing and playing happily. He looks so much like any other 2 year old if it weren’t for the blue tinge I could almost forget everything we’ve been through and everything we have yet to go through. At my 20 week scan we were referred to a cardiologist in Bristol, over an hour away from our home in Porthcawl, South Wales. We were told that my baby boy had something wrong with his heart, his arteries didn’t cross as they should, and he had a hole. The Cardiologist began to explain that Transposition of the Great Arteries (TGA) would mean that once he was born he would have no oxygenated blood going to his body.
I shut off, I didn’t want to hear her tell me I would have to terminate the pregnancy. It was a few minutes before I realised she was talking about surgery though, and not termination. I had never heard of Congenital Heart Defects and had no idea what to expect.
Dr Tsai Goodman began to explain the condition further and told us that the Ventricular Septal Defect (VSD) a hole that my baby would be born with would allow some oxygenated blood (red) to mix with the deoxygenated blood (blue) and so some oxygen would get to the body but that he would need open heart surgery within days of being born. Because of this, I would have the baby in St. Michael’s Hospital, Bristol so he could be transferred to the Children’s Hospital just down the hill.
I was induced two weeks early on 10th December 2007 and after a difficult birth where anything that could’ve gone wrong did, I gave birth to my gorgeous boy on the 11th. I only saw him very briefly through a mass of midwives and specialists as someone held him up and said “look, here’s your son” and then he was taken to SCBU.
I didn’t see him again until that evening when I was wheeled up on my bed, still in my hospital gown and being sick. I had been given a picture of him though which I gazed at through my drug induced haze (hospital drugs I may add!). He didn’t look as blue as I’d expected.
Iolan was transferred the following afternoon so I discharged myself, against all advice, and walked, with my luggage, to the Children’s Hospital. When I got there Iolan was just being settled into a side room on the ward where there was a pull down bed for me. He had several scans and tests over the next few days and they found that his hole was a lot bigger than they’d thought it was so surgery wasn’t needed immediately, his oxygen saturation was in the high 80’s which was good.
We were told that if we could get him to feed orally rather than through his ng tube we would be allowed to take him home. We struggled for almost a week trying different positions for breast feeding, nipple shields, and various bottles and teats. Eventually he would take a few ml’s from a bottle at a time. Iolan’s surgery was booked for 7th January and at just 9 days old we were allowed to take him home for his first Christmas and New Year.
I was so worried that something would happen while we were home but we were reassured that if we had any worries we could ring the ward, day or night or go to the local hospital, or Cardiff Heath where we’d had lots of prenatal scans.
I settled into a tough daily routine of expressing breast milk, sterilising bottles, teats and the breast pump equipment, trying desperately to get him to feed and changing and washing me and him after he’d sicked up the precious few ounces of milk we’d taken hours to get into him as well as having the usual family and friend visits, and midwives coming round every day.
We did manage to get out a few times and had lots of people looking at the new baby, only to be told he looked cold and did I have him wrapped up enough, that was the toughest part.
We had a scan between Christmas and New Year so they could check everything ready for his switch operation, where they would switch the arteries around so they were in the right position and plug the hole.
They found 3 other defects which meant he wouldn’t be suitable for the switch. Pulmonary Stenosis, sub pulmonary stenosis and a bicuspid pulmonary valve.
Surgery was quickly rearranged, he was to have a balloon atrial septostomy at 22 days old, a week earlier than the planned surgery. This one was keyhole, so we would only be in for a few days this time.
Surgeons made an incision in his groin and worked their magic from there reopening a hole between the top chambers that all babies are born with that naturally closes shortly after birth.
Surgery only lasted a few hours but at the time it was the longest few hours of my life. My parents and Iolan’s dad went and got some lunch. The whole time I was holding back tears and in a complete daze. We went back to the hospital and waited for Iol to come out of surgery. It had all gone well and Iolan was awake quite quickly afterwards.
We had lots more routine scans over the next 21 months, at each scan we were told he’s doing well at the moment so we’ll see how he is next time. We’ve been told about 3 different types of surgery, the Rastelli and then two others that haven’t yet been done in Britain after cardiologists decided the Rastelli wouldn’t be suitable for him either.
We have had a number of hospital stays, these have all been due to different viruses and bugs that he’s picked up but that can hit a heart baby much harder than a healthy heart baby. You just learn to live with it and adjust where you need to.
The heartbreak of CHD hit me on 6th August 2009 when Iolan’s heart friend Hope lost her battle just days before her corrective surgery, just 16 months old. I clung on to Iol so much. Four days later I walked into the lounge to find Iolan out cold on the floor, so grey I thought he’d gone too. I’d only gone to the toilet, I’d been gone less than two minutes.
I picked him up and tried to wake him. He was drifting in and out of sleep and then started to shake, almost like fitting. I rushed down to the doctors surgery, we were due there anyway and I thought it’d be quicker to get there than to call an ambulance and wait. When we got there Iolan’s temperature shot up to nearly 40 c and he kept being sick. The doctor rang through to the hospital and told me to take him straight there. He had a chest infection but it had caused his oxygen levels to plummet. We went home the next day.
At Iolan’s last cardiac scan in September we had the news we’d been waiting so long for – Iolan would be having his open heart surgery, they didn’t want to wait any longer.
He was booked in for a sedated scan in Cardiff at the beginning of October. It was so hard seeing him fighting the sedation, falling over as he tried to stand up and crying as he tried to resist the urge to sleep. The scan was fine and they found nothing unexpected. What was unexpected was how long it took for Iolan to wake up – nearly 4 hours, and how low his oxygen levels dropped to while he was sleeping. As Iolan has grown his ‘normal’ saturation levels have dropped to high 60’s – low 70’s but asleep it dropped into the 50’s. The doctor’s said it was just because his breathing slowed while he was asleep and once he woke up it should creep back up. Thankfully it did.
On 28th October, Iolan had a cardiac catheterisation in Bristol. This was keyhole again, so just a couple of nights stay on the cardiac ward. The surgery went well but he had a bit of a cough, probably from the tube that had been down his throat, which caused him to bleed so each time he coughed I had to apply pressure to his groin to stop the bleeding. He was in and out of sleep, mainly in sleep for 71/2 hours after the surgery, just opening his eyes slightly very occasionally. During this time his oxygen kept dropping, as did his heart rate and his blood pressure. At one point his blood pressure was completely different in each leg.
I could see the nurses were beginning to worry a bit that he hadn’t woken up and that all his levels were dropping. They put him on a drip because he hadn’t drunk anything since about 10 o’clock that morning and dehydration wouldn’t help his levels.
He finally woke up at about half past 11 that night, just after I’d decided to try to get some rest, typical! I didn’t care though, he was awake, and seemed ok. We went home the next day and were told we would hear about the next surgery in 4 – 6 weeks.
On 22nd December last year I made the trip up to Bristol to discuss Iolan’s next surgery. They are looking at doing the Rastelli, so after all this waiting we’ve come nearly full circle, but Iolan is likely to need a pacemaker after it because they will need to extend his Ventricular Septal Defect (VSD).
It is 3rd February now, and we are still waiting for a date for Iolan’s open heart surgery. This will just be the next step in Iolan’s surgery story, he will need more in the future to replace artificial valves and keep an eye on everything, so the 6 monthly routine scans and check up’s will continue, and no doubt the 6 monthly chase up of routine scans and appointments!
Although I experience all the normal mum worries, and all of the added heart mum worries, I wouldn’t change things for the world.
Everyday I look at Iolan, and everyday he makes me laugh, and smile. He is truly my inspiration. I don’t worry so much about the little things in life and I cherish everyday I spend with him, he is such a brave, strong little boy, I don’t care about the extra stresses and tears I have now, it is all for my little warrior, and I love him.
Written by Laura Richards
Laura Richards has given CHD-UK permission to use the photographs on this page.