Christopher’s Story
We didn’t find out about our son’s heart condition until his first night of life when he suffered a choking episode, which led him to be examined by a Neonatologist who then referred him on to NICU (Neonatal Intensive Care Unit) after he heard a heart murmur.
Still recovering from a traumatic birth, less than 24hours later, we were told that our new little baby boy would need surgery to repair a hole in his heart sometime before the age of one. Because Canberra has no Paediatric Specialists, we were referred to The Children’s Hospital at Westmead to see Dr Richard Hawker. Investigations revealed an official diagnosis of Tetralogy of Fallot. After a 2nd consultation with Dr Hawker our baby boy was booked in for surgery with Dr Graham Nunn (Cardiothoracic Surgeon) at just three months old.
After discussions with the surgeon we felt quite confident about things. However, nothing could prepare us for what we saw when our “little man” came out of surgery. Who knew that such a little body could have so many tubes and hoses going in and out of him. We chatted with the surgeon after surgery, after the shock of seeing Christopher lying there so helpless and lifeless, we were assured that the surgery went well and he would recover easily. We spent the rest of the afternoon and most of the evening by our little boy’s bedside. That night we said our goodnights to him and left.
We were staying in the hospital at the Parents’ Hostel so we could be close to him. We received a phone call around 1am to say that things were not progressing the way they would like and we should come upstairs. With in minutes of arriving at Christopher’s bedside, they started to give him CPR and had to cut him open for cardiac massage because of a cardiac arrest. Dr Nunn arrived soon after and because he was too unstable to move, his ICU room became an operating theatre.
Dr Nunn put him on an Extracorporeal Membrane Oxygenation (ECMO) machine to stabilise him and found that he had a bleed but could not find where it was coming from to stop it. Later Friday morning they re-opened him again for operation number three. After a few hours of waiting they finally stopped the bleeding. It turned out that there were two bleeds. One was a blood vessel that had burst around his heart and the second was caused when one of the stitches had come loose from CPR.
The next five days were some of the hardest that we have ever had to endure. There are not many parents that can say that they have actually seen their baby’s heart beating.
On the fifth day, he was taken back to theatre to be taken off the ECMO machine. He came back from theatre with a label across his chest saying “CHEST OPEN”. His skin was closed but his sternum was left open just in case of swelling and also just in case they have to back in again quickly. Because of what happened last time we left him, we stayed either by his bedside or in the waiting room until we knew he was stable. From then it was a waiting game to see just exactly what would happen.
Two days later he was taken back to theatre yet again for operation number five, to have his sternum closed. That afternoon and the next day they began to wean him off the drugs one at a time. Until he woke up, they couldn’t tell us one way or another if he would survive.
When he started to move a little here and there, we nicknamed him “Mr Wiggles”. As he started to wake up heaps more; he wouldn’t stop moving; we thought it was absolutely wonderful!
The most difficult thing for us from this point was watching and waiting for him to get stronger so he could support himself completely. He remained on Paediatric Dialysis for quite some time so as not to overload his kidneys.
Tuesday 20th February, 12 days after his initial surgery, I came to see him in the morning and I found out that he had been awake for most of the night. One of the doctors suggested that he might be having morphine withdrawals because he was on it for so long. He also had an MRI late the previous night, but the wait for the results was worrying.
After the doctors’ rounds on this morning, they agreed to start weaning him off the ventilator. This also meant that I could have a cuddle; the first time in 12 days. This really made my day. When I finally got to hold my little one, I was a little bit disappointed because it wasn’t really a cuddle. He laid on a pillow on my lap. Although, he had come off the ventilator and it was great to hear his voice again, because he still had the PD tube in his chest, a catheter and a cannula in his foot, I couldn’t cuddle him to console him and it was almost breaking my heart to see him so upset.
The MRI scan came back, but there was no report. We had to wait another night for review by a neurologist. Today really took it out of me so I went to bed a little early. I told myself “Now that he is awake, he’s going to need all my energy”. We were told that he might be in hospital for maybe another two weeks. Only time will tell because to this point, he has impressed everyone.
Two days later we moved out of ICU to the Edgar Stephens Ward. This was a good sign that he was on the mend. Getting him used to drinking out of a bottle again was a little more difficult that first thought. After a few attempts of using both bottle and nasogastric tube to feed, he was sucking normally and the NG tube was taken out. One less foreign object in his body means one step closer to going home. At the end of the day they also took him off the oxygen, which meant another step closer to home. The only thing left to wean him off was morphine and Panadol. Being on the ward, I got to sleep beside him and take care of him. The first night was a bit of a test; we were still a little scared of moving him around, thinking that we would break him or something. We treated him like a newborn until we were confident in what we were doing.
Christopher had an upset tummy for a while till he got used to having food in his tummy again. This meant a few sleepless nights.
After a few days on the ward, the doctors were quite impressed with his recovery. When the word “discharge” was mentioned I started to get a little excited. After another four days of tests and reviews, the day came for us to take our baby home. This day just happened to be my birthday. Christopher coming home was the best birthday present that I could have ever received.
Only time will tell us if he has fully recovered. There is still the concern of brain damage and delayed physical development.
Referrals were given for Physiotherapy, Neurology, ophthalmology, plastics and of course, Cardiology. He may need follow-ups for quite some time, but to date, he is fighting fit and healthy. He just had his review with Neurology, Cardiology, Ophthalmology and the wound clinic in June / July 2007, which showed nothing of concern, which was a huge relief.