In 2008 I became pregnant with my fifth child. The only thing unusual was that I did not have severe morning sickness like my other pregnancies, so much so that I even had an early scan to be sure that I was pregnant.
I skipped the 12 week one, and had my second scan at 20 weeks. As my husband had been to the early scan I just brought my sister. It was almost a routine being my fifth child, then it all changed.
I knew something was wrong as they took so long and then needed a second opinion. Time stood still whilst they said ‘unfortunately it has trisomy 13 and other complications, most people will have an abortion as it is not compatible with life’. I called my husband and he came to see the scan and hear the details of what happens next. I said straightway that I was Catholic and would be keeping the baby whom we named Raphael.
For the first week after diagnosis, I hoped for a miscarriage, then I began to look forward to meeting him even for a short time.
Our next visit to see specialist doctors seemed to be to explain the condition but always as a worst-case scenario, I think they thought I didn’t understand what this condition meant. Most of the experts we saw during pregnancy were the same, they thought we were naïve or unintelligent. It was hard to know who to trust. I was told his head would be the size of an adult’s.
The only helpful people were my Christian midwives and the spina bifida society. When I called their helpline and showed them the diagnosis, they said I should question the trisomy 13 diagnosis, as it could be a healthy child with spina bifida. Yes, this is not a contradiction in terms. And people should think about what they mean when they say ‘as long as he is healthy’.
At 36 weeks they suggested I have an amniocentesis. I didn’t see the point as you could see all the problems from the scan. But they said there was little risk of miscarriage now as it would survive if I went into labour and it would help determine if he would require a spina bifida operation at birth. If he had trisomy too, he would die within hours of birth, so it would be only palliative care. So, we agreed. The amnio result to our surprise showed that there was no trisomy 13, although he still had a very severe form of spina bifida.
On 27th June 2009 I gave birth to Raphael by caesarean. He was big, healthy weight and beautiful with thick black hair. So, he didn’t die at birth but had spina bifida. In fact, the spina bifida wasn’t particularly problematic, it was the kidneys that were a concern.
We spent the next nine months in and out of hospital just because of the kidneys. It was a difficult time to manage the four younger children although we got a lot of support from our church community. We had many signs and coincidences over those months. We had to have an operation to adjust the shunt when he was 5-month-old. It was the week when St Therese’s relics were in London. I really wanted to go but the operation was in the middle of the relics visit. But he recovered so quickly that they sent us home earlier and I had time to go straight from the hospital to catch the last hour of the relics at the Cathedral.
When he was seven months old his kidneys started to deteriorate and he began dialysis. This was during Lent and we noticed that he often became less well from about Wednesday, Friday being worse, then Saturday he would be well again. This happened each week, to the extent that the doctors noted it. Then the point came when the dialysis was making him worse and there was no other treatment. We brought him home for his last two weeks for end-of-life care. Maundy Thursday was his last day that he was responding. In the night he cried, which he hardly ever did, as if to say will you stay up with me this last night like the agony in the garden. Good Friday was his most sick day he was breathing shallow and mostly sleeping, we expected that as it was a Friday, and a significant Friday. He died at 1.30am on Holy Saturday morning.
The two coincidences we had were that he lived for exactly 40 weeks to the minute. It was a sign that we made the right medical decisions and the significance that pregnancy is 40 weeks and the many references to 40 years and 40 days in the Bible. But what we also found out later was that Pietro Molla also died at 1.30am age 97 that day. He was the husband of St Gianna Molla who we prayed to for intercession and whom I felt the close presence of when Raphael was dying.
After his death I couldn’t speak easily about him for a couple of years, then time healed and I had two more children, one of them on Easter Saturday which meant all those anniversaries took new meaning. I look back at his nine months that he spent with us as good times. He smiled a lot and stared deep into your eyes when you spoke. We enjoyed his short life, and even though we miss him he is still a part of our family and will always be remembered. Who knows what is the perfect amount of time to live. Maybe it is 97 years or maybe it is 40 weeks.
