I had routine scans at both 8 and 20 weeks and we also opted to have the triple tests. Everything seemed to show that our baby was perfectly healthy and we had no reason to doubt it wasn't because our little boy was a happy, healthy 4 year old at the time.
On the 15th April 2002, when I was 33 weeks gestation, I went for a routine checkup at the hospital and they admitted me with high blood pressure. I felt fine and my baby seemed quite happy kicking away inside of me, so I asked if I could go home, but they insisted I stay in hospital.
Two days later on the 17th April (my 21st birthday) I had a scan just to check that my baby was ok because my blood pressure was still rising. The scan showed that my baby was smaller than she should be and also that the placenta wasn't working as well as it should be. I also had high levels of protein in my urine. In the end they decided that they would induce me on the 19th April, but they wanted to give me a course of steroid injections first, to help develop my babys lungs.
However the following morning I went into labour by myself and after a long day I finally gave birth to my little girl, Lucy Olivia, at 16:16pm. When she was delivered she wasn't breathing, but they managed to resusitate her and I got a tiny glimpse before they rushed her away to the Special Care Baby Unit. I remember just how tiny she was. She was only
3lbs 7 1/2oz and she was absolutely beautiful.
One of the doctors came over to us and said 'I don't know whether you saw your little girl then, but she has a cleft lip and palate, 6 fingers on each hand and 6 toes on one foot. She also has an umbilical hernia. This may indicate that she had Downs Syndrome or another chromosonal abnormaility and she is very poorly.'
I had noticed that she had a cleft lip, but nothing else. We were in shock, but we just prayed she would live.
We spent some time with Lucy in Special Care that night and both me and my partner both felt the same. We could cope with any problems that she had, as long as she lived.
Little did we know that the following day we would find out the devastating news that would change our lives forever.
On Friday 19th April, we found out that our little girl did not have Downs Syndrome, but that she had Patau's Syndrome (Trisomy 13) instead. Patau's Syndrome is a condition not compatible with life and we were told that 90% of babies born with Patau's seldom survive infancy with most dying within their first year of life.
We were advised to get our little girl blessed as quickly as possible, as they didn't expect her to survive the weekend, so we had her blessed that day.
After that we spent all the time we could with Lucy. At first we were crying a lot and couldn't believe that she was going to leave us. However, the weekend came and gone and she was still here. I said to my partner 'we can sit here and cry and wait for her to die, or we can make the most of our time with her.' We decided we had to make the most of our time with her.
That next week was a long week and though she had her times when her breathing was poor, overall she seemed to be stable. Then on the Friday when she was 9 days old, she kept on stopping breathing and was needing lots of oxygen. In the end we were asked whether we wanted the nurses to put her on a ventilator or let her go. What an awful decision to have to make. Although, deep down we knew that the ventilator would only be prolonging her life, so we decided we had to let her go. We took her into the family room and we held her tightly in our arms.
Although once we were in there she decided she didn't want to go and her breathing improved. For the next week all she showed was signs of improvement. She started putting on weight and came off her drip and needed less and less oxygen until she barely needed any. Her skin was glowing and she looked so much more healthy than the week before. However, we were always reminded that the outcome would still be the same.
Our little boy came upto the hospital every day to see his little sister. He helped to bath her and dress her and feed her through a tube. He loved her so much and said that he was her big brother and wanted to look after her.
Then on the 5th May 2002 I went to give Lucy her 11pm feed and she stopped breathing. This had happened before, so we weren't concerned. My partner just passed me the oxygen mask for her and usually she only needed a little whiff, but this time she never responded. We shouted for the neonatal nurses and they came running over to us. They grabbed Lucy off me and put her on a table. They put the mask right over her face and were having to pump oxygen into her. It was such a horrible thing to see them trying to pump life back into our little girls body. In the end she started breathing, but it wasn't long until she stopped again. This happened all night until the next morning and before long she was barely getting chance to recover from one episode before it happened again.
Then Lucy had a really bad episode and though they managed to resusitate her, we were told that she had lost her sight as a result from it and we could see she was in a lot of pain. They gave her a sedative to try and make her more comfortable and then they asked us the same question they had asked us the week before. Did we want to put her on a ventilator or let her go?
We knew what we had to do because it was best for her. We didn't want her to suffer any more, she hadn't deserved to suffer at all. We nodded our heads, to say we wanted to let her go because neither of us could say the words.
We took Lucy in the family room, just like we had the week before. I think we just expected her to keep breathing, defy the nurses like she always had, but she never,
As I held her tightly in my arms, my beautiful baby girl 'fell asleep' forever.
She was 18 days old