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About Madeleine

We were overjoyed when we discovered we were pregnant in March 2004. The pregnancy went very well, and having been a bit underweight before the pregnancy, it was no surprise that I only had a small bump.

It was only when we went for the 3D scan at 32 weeks that we first became aware of a problem. The scan showed that our daughter had club feet. It also showed that she was also very small (skinny) for her gestation, and I was given strict orders to take it easy as there was thought to be a problem with the blood flow to the placenta.

On Wednesday 13 October, when I was 36.5 weeks pregnant, I became very uncomfortable and drove myself to the hospital, to discover that I was actually in premature labour. I was kept in overnight and medicated to try and stop the labour. As we knew she was going to be small, the Doctors wanted her to stay in the womb as long as possible.

Eventually, at about 9am on Thursday 14 October, the decision was taken to deliver Madeleine by caesarian section and by 12 noon we were parents. She weighed 1.87 kg (4.1lb) and was 46cm long. As she came out, Madeleine cried once and then immediately stopped breathing. Her Apgar was only 1 or 2 and her nose was so small that the paediatrician had a problem getting even the tiniest breathing tube into her, and she was rushed off the neo-natal ICU, where she was immediately ventilated.

In the following days, a number of tests were undertaken to find out what was wrong with Madeleine. It was only eight days after her birth, on 22 October 2004, that the Dr gave us the result of the chromosome test he had run as a last resort. Her diagnosis was trisomy 18 or Edwards syndrome - something we had never heard of, except perhaps in a genetics class at university.

We immediately started researching Trisomy 18 and were devastated to discover what this meant - that only 10% of babies with this diagnosis make it to one year old, and that Edwards is "incompatible with life".

We sought counsel from our pastors, who loved, comforted and cried with us, and broke the news to our close family and friends.

Madeleine had been taken off the ventilator before her diagnosis, but was re-ventilated after she struggled to breathe. The medical staff asked us what we wanted them to do - how far should they go in resuscitating her if she stopped breathing again, in light of her diagnosis. After much prayer and tears, we took the decision that they should resuscitate her manually and with oxygen for a specific period, but should not put her back on a ventilator.

Our family, including those from overseas, gathered for a dedication service given by our pastors in the NICU on Tuesday 26th" October, after which she was taken of the ventilator. Despite fearing the worst, her breathing stabilized and we eventually went home for some sleep.

In the weeks that followed, we discovered that Madeleine also had a large hole in her heart, and that she was prone to frequent apnoea attacks, (stopped breathing) due to an underdeveloped brain stem. Since she did not having the sucking reflex, she also had to be fed by NG tube - and since her nose was so small, this had to be inserted through her mouth.

On 20 November, her Daddy's birthday, we brought Madeleine home after 6 weeks in the ICU. We learned how to change the NG tube every few days, how to resuscitate her and administer oxygen.

She loved being home and would go every week for her weigh in at baby clinic, where even the nurses commented that she was gaining weight and thriving.

Aside from a few visits back to the ICU due to a chest infection, most of the remaining five weeks of her life was spent at home with her Mummy & Daddy. She loved her baths and especially loved massages, which we'd give her a couple of times a day. She was constantly on an apnoea mat and frequently stopped breathing. On several occasions, it took us a while to get her breathing again, and we would call the paramedics as a backup.

In the early hours of 24 December 2004, the apnoea alarm woke us up and we began to resuscitate her as usual. However, this time we could not detect a heartbeat and could not get her breathing again. We continued administering CPR until the paramedics came, but as per the decision we had made many weeks before, we stopped them from intubating her. We did not want her suffering to be prolonged by life on a breathing machine. She passed away at 12:30 am on 24 December 2004.

Her body was put to rest on Sunday 2 January 2005. She is now in the arms of Jesus and we can't wait until that day when we see her again.

Arnaud & Helen Malherbe
Johannesburg
South Africa