Changed Forever

Diagnosis: Spina bifida & Hydrocephalus

By Luis' Mum

On Valentine's Day, 2006, we found out we were expecting our second baby. We were ecstatic but frightened, as we had lost our first baby at 10 weeks and were worried that I might miscarry again.

The pregnancy progressed well. As we sat in the waiting room for our 23 week scan, little did we know that our world was going to come crashing down around us. The scan took longer than our 12 week scan, but still I had no idea that there was anything wrong. The sonographer asked me to go to the toilet and empty my bladder as she couldn't see the spine well. When I got back, she scanned me and then said, "I'm sorry but there is a problem - I think your baby has spina bifida." I couldn't believe what was happening, not again! I felt like I was reliving the horror of the year before. When I heard those words again: "I'm sorry," I lay crying, my husband shouting "No!" I was then scanned by a consultant who confirmed the diagnosis.

We were sent to King's College Hospital in London, the Harris Birthright Centre, world renowned for dealing with fetal abnormalities. Here they were able to scan me using high technology equipment. They confirmed that our baby had spina bifida and told us that the baby wouldn't walk, would have urinary and bowel incontinence, and, as there were signs of hydrocephalus, would have mental and learning disabilities, would not be able to feed, see, or hear. They told us that the baby would be taken away after birth to have an operation to close the spina and have shunts inserted. As the spina bifida was open and lumbar sacral, the chances were high that the baby would catch infection and the prognosis was poor. We were told that the baby was a boy and otherwise healthy. From this devastating news we thought there was no option but to end the pregnancy.

Luis's heart was injected with potassium and he died on June 29th at 3:50 p.m. From here, I was sent back to my local hospital and given a tablet to start rejecting the pregnancy. I was sent home and told to return on July 1, when they would give me prostaglandin to start labour. I arrived at the hospital at 8:00 a.m. on July 1, and Luis wasn't born until July 3, at 11:05 a.m. He was born at 23 weeks, six days, weighing 1 lb 6 oz and was 30.5 cm long. I was given good pain relief and we were able to spend as much time as we wanted with Luis. We stayed all night. My husband was able to stay, too; he had his own bed and the room was well equipped. It was lovely to have Luis sleeping in the Moses basket next to me while I went off to sleep. We didn't leave until the next afternoon. We have beautiful pictures of Luis and were glad we could spend the night with him. The vicar came and blessed Luis and he was taken to the mortuary by the hospital chaplin.

Luis was buried on July 10th at our local cemetery and I visit every day. It brings me great comfort as I feel I'm with him. Luis came home the night before the funeral and spent the night in his room; this also helped us to feel like a proper family. It has been 6 weeks since our lives changed forever. Every day my life is filled with sorrow, pain and heartache. Luis will be in our hearts and thoughts forever.


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