William’s Story
After being together for almost 11 years, Brett & I finally decided to start a family of our own. It didn’t take long before I was pregnant & we were both elated! We had regular visits to the obstetrician & I had a fabulous pregnancy, apart from having gestational diabetes from around 28 weeks into the pregnancy. Our translucency scan results came back at a risk of 1:10,000…near impossible chance of Down syndrome. I had an extra ultrasound at 32 weeks, to check the size of the baby & make sure all was well – nothing unusual was found. Everything was going great. On the 12th of March 2006, 4weeks before our due date, I went into labour. We had a gorgeous baby boy 3 hours later. Mum & Dad were both over the moon; he seemed perfect in every way!!! Our son was to be called William (Wil) Adam Sparke.
The day Wil was born we were assigned a pediatrician, Dr Gadd, who told us he could hear a murmur in our babies heart. He would keep an eye on it, but was unsure of the severity of it at first as many babies are born with a murmur that goes away after a few days. By the next day, the pediatrician told us he was quite concerned about Wil’s murmur. When Wil was just 2 days old he sent us to see a cardiologist, Dr Cooper, at Westmead Children’s hospital.
Dr Cooper examined Wil & told us that he had an Atrium Ventricle Septal Defect –AVSD. He had 3 holes in his heart; one of which everyone is born with but it closes over after we are born, though Wil’s had not. The holes in Wil’s heart could not be healed with medication and would not heal over on their own. He would have to have surgery to repair the holes. Normally this surgery is done at 3 months of age.
On the 20th of March, we were able to go home. We went home on a Friday and had to go back to the hospital to have Wil weighed and checked over by the pediatrician the following Monday. Due to his being born prematurely and his heart condition he had trouble feeding and his weight was very closely monitored.
Roughly a week later, Wil started to have difficulty breathing, as his heart condition caused back pressure in his lungs & gave him fluid on his lungs, making breathing and feeding difficult for him. He was given a one off dose of medication to reduce the fluid on his lungs & sent home again. The Doctor thought it best to keep him at home, away from the threat of catching something from other hospital patients.
Just 2 days later, we took Wil to the hospital emergency at Mona Vale Hospital because he was having breathing difficulty – he was panting & struggling to breath. He could not feed properly and was rather unsettled .He also had difficulty sleeping flat on his back, due to the fluid build up on his lungs. Diuretics were subscribed to reduce the fluid in his lungs and we were sent home again.
Over the next few days things only became worse. His father and I spent the week-end taking turns in nursing him in an upright position on our chest so that he could sleep between his feeds. We were all exhausted. We had to go back to the Nursery at the hospital to see the Pediatrician the following Monday (3rd April 2006). The Doctor checked him over & said I could not take him home; he had to be readmitted at Mona Vale Hospital due to his “Failure to thrive”. It was just awful, we were devastated. I felt like I had failed him in some way and should have done something more for him, the nurses reassured me that there was nothing more we could have done…he was a very sick little boy. He now had jaundice and had lost a lot of weight .He was really struggling to feed and sleep. Wil was very unsettled and slept best on an angle. It was decided that Wil would have to have his surgery as soon as possible and could not go home in the mean time. We (Mum and Wil) both took up residence at Mona Vale Hospital, as I was breast feeding.
We met with the surgeon, Dr Nunn, who explained how he would go about repairing the holes in Wil’s heart and his surgery was scheduled for the 18th of April. However, we could not wait that long either; the surgery had to be bought further forward, as Wil’s health was deteriorating faster than expected. Wil was completely unable to feed on his own the 2 weeks leading up to his surgery; he was being fed my milk through a tube inserted down his throat and into his little tummy. They had monitors checking his heart and breathing around the clock.
Wil was to have his first surgery at 4 weeks of age, on the 12th of April 2006, at Westmead Children’s Hospital. It was almost 7 hours from the time he was taken out of our hands until we could see him again. It seemed like an eternity, we thought about going home, but could not stand the thought of being too far away. We stayed on the grounds of the hospital, with our mobiles switched on and the beeper the hospital gives out to let you know when the surgery is completed. We spent what seemed like a life time reading the magazines we had bought a few times over & doing the crosswords, followed by staring blankly at each other or into space, then…finally… the beeper sounded, our wait was over. We rushed upstairs to the Pediatric Intensive Car Unit (PICU), to meet with Dr Nunn and get the prognosis. The news was great, the surgery had been successful and it was not expected that he would need any more surgery. Dr Nunn was of the opinion that he would come off the medication and lead a perfectly normal life. Wil spent a week recovering at Westmead Children’s hospital, with 3 days in PICU& a few days in the high dependency ward. It amazed us how quickly he bounced back; he had a real thirst for life.
From there it was back to Mona Vale Hospital for Wil to establish feeding and gain some weight, before we could go home. By the time that day came, Wil was cooing, smiling and laughing …and 9 weeks old. Wow… 9 weeks was a long time to spend in hospital, and so much had happened to our “gorgeous baby boy”. It was a very tough time; we were just so relieved to come out the other side in tact. It was another month before Wil came off the medication to reduce the fluid on his lungs. Wil was now developing normally and started rolling over and eating solids around 18 weeks of age. He was doing well.
He started to have difficulty breathing again at the end of September and had to go back onto the medicine that helps reduce the fluid in his lungs, diuretics, once more. After another week-end of being unwell and very little weight gained, Wil was admitted to Mona Vale Hospital Emergency then transferred to Westmead Children’s hospital – Edgar Stephen Ward. It was the 9th of October 2006.
To begin with the Doctors tried to control his condition with medication, but it wasn’t to be enough. After a week, Wil was diagnosed with having a leaking and narrowed Mitral valve, seemingly due to unusual scarring from his previous surgery. Even the Doctors had not expected this to happen, they told us it was extremely rare for this to happen. And again, we could not go home before the surgery took place. It was expected they would have to replace the Mitral valve with an artificial valve.
Dr Nunn was to perform the surgery on the 26th of October 2006, taking about 4 hours from the time we handed him over to the anesthetist until we met with Dr Nunn again. This time we did go home and come back just as it was all finished. Dr Nunn was able to repair his valve, instead of replacing it. We were so relieved. Dr Nunn had been able to repair the narrowing of the valve, but not the leak. However, it was minimal and not expected to cause too much trouble. Wil spent two and a half days in PICU and then returned to Edgar Stephen ward to recover. After a six week stint in hospital, Wil (and Mum) came home again, on the 8th of November 2006. I think the second surgery was much more traumatic, especially for Wil, as he was 8 months old and becoming very aware of things, like being hungry or being restrained. He was unsettled and crying for the most part of 12 hours after his surgery, until we could feed him. We still had to give Wil quite a bit of medication for some time, at first he was on 4 different medications, 4 times daily.
Two days after we got home from hospital, Wil rolled over all on his own, again. He stopped rolling when he became sick. A month or so later he was sitting up on his own and started talking… his first word was “Dadda”, followed closely by “Mmm-um”. In the January of 2007 he started crawling too. His health just kept improving and at 14 months of age he started to walk, and was running a few weeks later.
With regular Doctors visits and time Wil’s medication was slowly reduced. In December 2007, a week before Christmas, we got an early Christmas present from Dr Cooper. Wil no longer needs to take any more medication. At some stage, down the track, Wil is very likely to need more surgery, to replace his Mitral valve. He will be monitored until then, we have no time frame because it depends on how things change as he grows and no-one can predict that. For now he is very well. The leaky valve in his heart is not bothering him, so he has been able to grow and develop really well. What a relief!!! I truly cannot think of many things worse than your child being so unwell. Thank god for the hospital staff and Doctors who perform miracles every day by helping and caring for our children when they are sick! We would also like to thank HeartKids for their ongoing support…it too has been invaluable.
Wil is almost 2 years old now and spends his time doing all that all toddlers should be able to do…going to play with friends at the park, swimming at the beach and just loving life. He gives us so much joy…I cannot put it into words. He has a really lovely nature… and loves being rough and tumbled, just as little boys should. It’s great for him to be physically able to find a little mischief and cheekiness at times too. So his Father and I now spend our time enjoying being in his company and giving him all the love he can handle.
My name is Kim, I am Wil’s Mum and this is just the beginning of our journey. I became the Membership Secretary for HeartKids NSW at the end of 2007. It is our way of giving something back to an organization that gives so much support to people in the same boat as us. Brett & I attended the HeartKids NSW Ball last year & would thoroughly recommend it. Apart from being a great night out it was also an opportunity to meet some other people who know what you have been through, as it is impossible to fully understand if you have not been there yourself.