Shared experiences

Very many thanks to all the parents, siblings, families and friends, who have allowed us to share their experiences on this site.

Ifan

As a midwife I had looked after women who had had stillbirths, and also delivered stillborn babies, but the last thing you expect is to have a stillbirth yourself. We had been trying for a baby for almost 2 years when I found out I was pregnant in July 2000.

We were absolutely delighted, and I started making plans for a home birth, as I wanted everything low key. I wasn't expecting to have any problems in my pregnancy, and I certainly didn't expect things to go as drastically wrong as they did.

The first 3 months were hard, as I was so exhausted. But that slowly improved. At my 20 week scan we found out we were having a boy. Five weeks later the extreme exhaustion returned. After a couple of days off work I came back on an early shift, and got my bloods checked, as I thought I was just anaemic. Little did I know that by doing that I was saving my life, but unfortunately not that of my son. Next thing I knew I had the haematologist rushing up to the ward as, yes I was very anaemic, but also my platelets were dangerously low. More bloods were taken to double check everything, and I got the results after lunch. My work colleagues teased me by asking if I needed a wheelchair to go down to the canteen! They said later that if they actually knew the blood results they wouldn't have let me off the ward.

The results weren't what I was expecting. My platelets were only 10 (normal being 150-200 x 10 9 ). I was told I had a condition called Thrombotic Thrombocytopaenia, where my platelets were very low, so I was at risk of bleeding, but also they had formed little clots throughout my body. I was admitted to ITU for plasma exchanges, which is like a type of dialysis and is the only treatment for this condition. Well that was why I thought I was in ITU. Nobody had told me that I was dangerously ill. That night my baby didn't move at all, an ominous sign and I knew I had lost him. I had thought we would get to 28 weeks and he would be delivered then. I didn't expect to loose him. When one of my colleagues visited me before she finished her night shift I got her to listen in for me, knowing that she wouldn't hear anything. The scan confirmation was the worst thing, then all hell let loose as I had to be delivered, but my blood condition was worsening. The clots had ended up in the cord and placenta, rather than in any of my major organs, but there was still a risk that they could still do that. My parents were told they had to come up immediately, along drive from Southampton to North Wales .

The induction was very painful, until I started on a morphine pump, and finally gas and air. I had to consent for a hysterectomy, as my consultant was expecting me to bleed when I delivered, and the way he put it I realised that he was telling me that I could die.

Ifan Morgan was born on 13 th December 2000 at 01:59. And I didn't bleed. He was absolutely perfect, and looked like my husband. After he had been delivered, my blood condition rapidly improved, and I left ITU 2 days later, going home on 23 rd December.

I was determined to have another baby, but first we needed to find out more about my condition, and the chances of it reoccurring. I saw a specialist in London, who did further investigations, and I found out I was missing an enzyme to do with the clotting system, which meant without frequent plasma exchanges in another pregnancy, this condition would reoccur. I was also made very aware that if I had another pregnancy I was putting my life on the line. There would be no guarantee that either the baby or I would survive.

We took that risk, and in June 2002 I found out I was pregnant again. The plasma exchanges started at 12 weeks, and I stopped working at 16 weeks. The only problem I had in this pregnancy was that my dialysis lines kept getting infected, and were changed 3 time. The 3rd one stopped working after it had been in 3 weeks, and I had now got to 35 weeks. It was time to deliver. The decision was made so quickly. I was admitted the same night, but the induction didn't work, so I had a section on 1 st February 2003, and my second son Gwion Morgan was born at 21:16 weighing 6lb, and was 5 weeks early. Everyone who was on duty were anxiously watching through the doors of theatre to make sure everything was OK. I was told I could have charged!

My condition didn't reoccur, thanks to all the treatment and care I had from both the renal and obstetric staff. The renal girls were delighted as Gwion is the first renal unit baby, and all my work colleagues were very relieved that everything had gone well. But I discovered that we had delivered at the right time as my placenta was starting to separate, which doesn't bear thinking about.

Gwion is now 15 months old and is such a great source of happiness to us. I often wonder what it would be like to have 2 little boys playing together, but that will never be. Ifan is never far from my thoughts, and I often feel guilty about not going to his grave very often. His photos, along with his brother's are everywhere in the house, and Gwion will grow up knowing about Ifan.

Kirsten