Deanna's Story

Deanna was born on 20th December 1993 at 10.15 am by caesarean section. She weighed in at a 'healthy' 81b l3oz and all seemed to be fine. That is, until the paediatrician came to do a routine check the next morning and found a heart murmur. ECG's and x-rays followed but nothing was found. We were told that 40% of babies are born with heart murmurs and not to worry. Ever had that awful feeling in the pit of your stomach that something terrible is about to happen, that something is wrong but you don't know what?

At our insistence we were sent to the Wessex Cardiac Unit in Southampton for an echo. We arrived at 10.30 am on Christmas Eve 1993. Deanna was checked immediately by a doctor, then another and another. After a short while a man, who we now know as Dr Keeton, arrived in theatre greens. He explained that he would sit down and talk to us after a scan had been carried out. I sat with a nurse who held my hand whilst Deanna was being scanned. I was watching what was going on, almost as if it wasn't happening to our baby. I could hear the doctors talking but couldn't understand what they were saying. I remember innocently saying to the Nurse, "you won't keep my baby here will you?", "Not unless we really have to" she replied. It was at this time that I realised there was a problem and I was scared.

Neil, Granddad Ken and myself were then taken to a side room to discuss the diagnosis. It was there that we first heard the words: double inlet left ventricle (DILV) and rudimentary right, PDA, VSD, transposition of the great arteries, coarctation of the aorta and all sorts of other words that at that time meant nothing to us although they had been explained. The outlook was bleak and we were told Deanna would need surgery, not only once but three times. The plan was to operate immediately, in about six months time and again when she reached four or five, the final operation being a Fontan. I felt physically sick and had to lay down on a bed, we were all in a state of shock. We made a decision to go ahead, we knew if we didn't our baby would die.

After being christened, Deanna went down for surgery at 4.00 pm to have a her pulmonary artery banded and a coarctation repair. We left the hospital and went home without our baby, something we weren't prepared for. We went to the local Church Christingle Service and they prayed for Deanna's recovery. At the end of the service, Granddad Ken came into the Church and said that the surgery was over, had gone well and Deanna was in intensive care. Unfortunately she developed post-op NEC and had to be treated with triple antibiotics, was starved for ten days and had to be tube fed, but she was soon up on the ward again. We were happy that things seemed to be going well, but still dreaded the future. What would happen? How would we cope? What did the future hold? Was there a future for us with our little girl?

Despite her major problems Deanna made a good recovery and we went home after a four week stay.

Going home was a daunting prospect for me as a first time mum, not only did I have a new-born baby to cope with, but one who only had half a heart! It is here that I must pay tribute to Dr Judith Pagdin, our GP, in whose waiting room I frequently found myself sitting. The least little thing and I was in a complete panic, but she was always there with kind words, reassurance and antibiotics if required!!!!!!

We returned to the unit when Deanna was four months old for a cardiac catheter and again when she was eleven months old for her second surgery, a modified Glenn Procedure. Walking back down the ward brought back all those old feelings of fear and the worries came flooding back. Deanna was in theatre for about six hours, the longest six hours in our lives, but things went well and she came off the ventilator at 9.00 pm that night and despite being told that she may need to stay in intensive care for nine or ten days she went up to the ward the next morning. Amazingly, we went home ten days later.

It was whilst we were in Southampton Hospital that I found out that I was pregnant with Abbie. I had suspected for a while but kept it to myself, wanting Deanna's surgery to be over before I thought about the new life growing inside me. I was scanned at Southampton at 20 weeks and, thankfully, all was well and Abbie was born 'healthy' on 4th July 1995.

Since her surgery Deanna seems to have gone from strength to strength. She is having swimming lessons, rides her bike, climbs and runs and generally seems fit and well. She does go a little blue after exerting herself, and gets puffed much quicker than other children. But she knows her own limitations and when tired will come and sit down for a rest and have a drink. Within minutes she is off playing again.

Deanna started School in September this year and is coping well with this and the demands it places on her. She has told her class about her heart and showed them all her scar which she is proud of. She will be back in Southampton later this year for a catheter. As for the future, who knows, if things continue on as they are we consider ourselves very lucky. She has not yet had the Fontan operation due to the fact that she has kept so well. We know, though, that she will need it at some time in the future. This is something we try not to think too much about.

Finally, I would like to thank all the staff on the unit, especially Mr Munro and Dr Keeton, Piers, Elsbeth and James who we have got to know well over the past five plus years. Thank you so much for your skill, dedication, understanding and kindness.