Archie

Archie was born, on schedule, on 27 January 1998, at home as planned. All our antenatal checks had been fine, so we felt a home birth would be nice, especially as at that time neither of us had much experience, or liking, of hospitals! The labour and birth went well and relatively quickly, and Archie seemed healthy and pink when he was born, with very good apgar scores. However, the midwife was not entirely happy with the snorting breathing noises he was making, so after an hour or so we were sent off to Poole Hospital to have him checked out: she suspected a possible infection.

At the hospital we had to wait for Archie to be examined, and his breathing gradually got louder, and his colour lost its rosiness. About two hours after arriving at the hospital, a paediatrician put a stethoscope to Archie's chest, and he was immediately whisked into the Special Care Baby Unit. As the day progressed, the news we were told got steadily worse: first, he had a heart murmur; then, he probably had a syndrome; finally, the heart problems that went along with the syndrome were sometimes non-operable and fatal. The nurse in charge of the maternity ward couldn't look us in the eye, and we were moved to a private room. Archie was transferred to Southampton General Hositpal later that afternoon. We were not allowed to go in the ambulance with him.

On arriving at Southampton General we immediately felt reassured. Archie's PICU nurse was an angel, and seemed so confident and capable, that we immediately felt a little more calm, and that we were in the best hands. She told us Archie had caused a stir among the doctors as he was such an interesting case. Dr Nanapragasam met us that night and explained what was wrong with Archie's heart: he told us Archie had CHARGE Association, and that as a result, his heart had been malformed. He was diagnosed with PDA, pulmonary atresia and VSD. Archie was put on a drug to keep his ductus arteriosis open, as it was the only thing supplying blood to his lungs.

The next week was extraordinary. Archie had a cardiac catheter when he was two days old, after which the doctors decided they could leave his cardiac corrective surgery until he had gained some weight and was stronger. It appeared that the ductus arteriosis was strong enough and large enough to keep the blood supply to his lungs going for a while. Archie, however, had other ideas. The duct began to close, and two days later he had to have an emergency Blaylock Shunt insertion. He was seven days old.

Unfortunately, this operation was not a success. Archie returned to PICU with his sats still in the low 80s, and we were told he would have to have his full corrective surgery the next day. It was at this point that we wondered whether he should have the operation or not: he had so far had surgery on his nose (for another aspect of CHARGE Association) which had completely bruised his face up, and he had a tube inserted through both nostrils to open them up; he had had a cardiac catheter, and also the shunt operation, and he was still less than a week old. We wondered how much we should put him though. We asked the anaesthetist who had come to talk to us about the next operation whether it was the right thing to do: he replied that it was absolutely the right thing to do, and that Archie had a chance. We wondered whether they could postpone the operation, as it just seemed that it would be too much for him: the anaesthetist said there was no point waiting, as Archie would only deteriorate. So, we agreed to the operation.

As you can see from the picture, Archie survived the operation. The procedure turned out to be easier than Mr Munro, the surgeon, had at first thought it would be, as he discovered that Archie did in fact have a pulmonary artery, but it was blocked. So, he cleared the blockage, patched the artery, patched the VSD, and put Archie back together again. Two weeks later he was returned to Poole Hospital, and three weeks after that he came home.

Archie visited E1 again in November 1998 to have a homograft pulmonary valve inserted and his patched artery re-patched. This time it was planned, and therefore less shocking, but it was still a frightening time. It was then that I first read a Wessex Children's Heart Circle Newsletter: I hadn't had time the first time round!

Since November 1998, Archie he has gone from strength to strength. Although he will always need to have his heart condition monitored, and will have to have his valve replaced as he grows, the early correction of his heart defects has given him strength and energy to tackle his other issues, which include being hard of hearing, problems with balance, blind spots, and one-sided facial palsy. He is a happy, busy and demanding little boy, and we are so glad that he has been given the opportunity to be so!

We will never forget our early days at Southampton General and the support and understanding we always got from the staff.