This is Curty's story

Our life was going so well, we had all the most important treasures – our two beautiful boys and our home. Ryan was seven years and Kyle was one year. We decided that we wanted another bundle of joy, only this time it would be nice to have the little one closer in age to Kyle. Before we knew it on our first try we were pregnant. It was like this baby couldn’t wait to come into the world.

On the 23rd of December, 2008 was our due date. The baby scan was all good with one exception; I had a low lying placenta. We were having another little boy and we were all very excited. I had many scans to monitor the placenta and I felt very tired but was told the third child would take it out of you.

I remember being very sore, as in my bump just didn’t feel right. It didn’t feel normal in comparison to my previous pregnancies. At 33 weeks I had another scan, it was good the placenta had moved, but unfortunately I was told I had excessive fluid, which is called Polyhydranios. I was advised that I would probably go into premature labour and would have to come back in four weeks for further monitoring.

On the 17th of November, 2008 our lives changed forever! We can only give you a slight indication as to how things changed and the pain that was to come over the next while. I started to have pains. No one really thought it was real as I was five weeks early and I had gone over by fourteen days on Ryan and nine days on Kyle. But the pain was real. Every thing happened within a few hours. I had to be transported by Ambulance to Wexford Hospital as things happened so quickly. Stephen followed and made it to the birth. I don’t think he will ever get over what happened that night. I had our little baby Curtis out in two pushes, when he came out he had died and the hospital brought him back to life. They kept saying to Stephen and me, we don’t know what this is; we have never seen this before.

Curtis had no skin on his legs. On his right leg the skin was gone from his thigh and on his left leg from below his knee. He had loss of nails on his left foot. He had a membrane at the right side of his face where his little ear was fused to his scalp. He had a head of beautiful black hair, and he was a good size, he was 5lb 12ozs. Curtis was taken straight to ICU. Although the consultants stated they did not know what this was, they were very quick to do research and contact Our Lady’s Children’s Hospital in Crumlin. Crumlin advised them to do an X-Ray on Curtis’s stomach to check for a blockage. Within a couple of hours the head of Wexford Hospital came to Stephen and I and explained that what they thought it was is Epidermolysis Bullosa (EB). They said there is no cure.

On the 18th of November, 2008 we were transferred to Our Lady’s in Crumlin and within ten minutes of arriving it was confirmed that Curtis did have EB with Pyloric Astresia. We were told that our little Curtis was the only baby born in Ireland with this severity. The Pyloric Astresia part which is only connected with EB was a blockage in a tube going into his stomach. That is why I had excess fluid, because he couldn’t swallow the amniotic fluid during pregnancy. EB is a genetic skin disease affecting one in four pregnancies that we would have. All this was very confusing as we had two healthy children already, but we were told this was luck.

On the 19th of November, 2008 we had a meeting with the consultants and EB team. They advised us they would have to do a biopsy on his leg and send it to Great Ormond Street in London to determine which type of EB Curtis had. They told us Curtis may have a chance if we do an operation to unblock the tube, this operation would only prolong his life until the results came back. The Biopsy was carried out that day.
Curtis Kenny

On the 20th of November, 2008 Curtis had his operation. A line was brought down to his stomach to help feed him and to cut away the blockage. When he came out of theatre we were told it was all a success. The next few hours would be crucial though as he was highly prone to infection. The next couple of days seemed ok and we saw an improvement but then we noticed his little stomach was swelling up and he seemed to us to go down hill rapidly. His right upper lung collapsed despite plenty of antibiotics and painkillers, including Morphine, Clonidine and Paracetamol. To us Curtis was suffering more than he had to. If asked the question whether to proceed with the operation again we would think to let him go as Junctional Epidermolysis Bullosa (JEB) with Pyloric Astresia is incompatible with life, and the operation only adds to the pain, both for us as parents and especially for Curtis as the baby.

On the 26th of November, 2008 the Biopsy results were back, both of us knew the news wasn’t good. We could feel it that morning and were very reluctant to go up to the ICU that day. Professor Irvine and his team called us to receive the results. The results confirmed a diagnosis of JEB with Pyloric Astresia which is incompatible with life. We had no alternative but to arrange to withdraw the ventilation support from our little baby. Before we could do this we requested that our families be allowed to see Curtis as we wanted them all to know him. Some had the privilege of meeting him prior to this as the hospital was very obliging. DEBRA Ireland financially supports a full time EB nurse in Crumlin, Dervla O’Connor , whom we think could not ever get paid enough for what she has to do. We will never forget the way she looked after our little baby and we will be forever grateful, to her and the staff of Our Lady’s Hospital, they could not do enough for us.

On the same day our families came and said their goodbyes to Curtis. We got to hold him for the first time in his short nine days of life. Even though we knew that when we withdrew the support from him he would be gone, it was like being given a healthy baby to hold. We were so proud of him. It was explained to us that Curtis would die in a few minutes once the support was withdrawn. At 9.00 p.m both Stephen and I decided that Curtis couldn’t take anymore and it was time. So the support was withdrawn and the experience was devastating. Baby Curtis fought for 5 hrs and 25 minutes to stay with us. He did not want to go.

On the 27th November, 2008 at 2.25 am Baby Curtis gave up his fight and decided to go, and that is the day that part of us died also. He made just ten days old. When we walked back into the room and seen him laid out in a baby grow, our reaction was as you would when you see a healthy new born baby for the first time, “ah isn’t he beautiful” . We could see he was at ease, the pain was gone, and he didn’t have to suffer this anymore. “That Dirty Filthy disease” beat him but now he looked at ease. We brought Curtis home that night and kept him at home until his funeral ceremony.
Friday 28th of November, 2008, is the day our little baby was laid to rest.

We express our thanks and gratitude to Debra for all the help and support they have given us over the year, a special thanks to Deirdre Callis – family support counsellor for all her continued support.