Ebony Corscadden's Story
Born May 15th 1999, passed away 15th November 2000
Ebony's story
As told by Mum and Dad on 30th August 1999"Ebony Forbes Corscadden was born at Hawkesbury Hospital in Windsor, Australia on the 15 May 1999 at 10.57am - 5 weeks premature. Kelly's labor was about 7 hours & there were no complications. Around 6 hours later Ebony started to become jaundice, and 5 hours later was rushed to The New Children's Hospital at Westmead, with extreme haemolytic jaundice. We were told she may require a blood transfusion if her bilirubin levels didn't stabilise, which were at 290 on admission. We went to bed awaiting a call if she was to be transfused and awoke relieved the next morning realising she must have had a good night.
Ebony's bilirubin levels remained relatively stable under three lights, so on day two, when her bilirubin was 263, they removed one of the overhead lights & on day three (18.5.99) her bilirubin peaked at 315, so she went back under three lights again. On this day her haemoglobin was 13.5. On 21.5.99 (6 days old) her bilirubin was 240 & they decided to take all three lights off her. We were so excited because she was put in a normal cot & we could pick her up & give her cuddles whenever we wanted. We were crushed the next day because we came in to find her with the biliblanket under her. Ebony's bilirubin went up to 270 & her haemoglobin was 9.8. The following day she was put back into the special cot and an overhead light was added, her count that day was bilirubin 296 & haemoglobin 8.6. It felt like two steps forward & three steps back. On 25.5.99 her bilirubin dropped to 235 so they removed the biliblanket, & she just had the overhead light. Her haemoglobin was dropping & was 6.2, & we were told if it kept dropping she'd need a blood transfusion.
Life was really beginning to suck by this stage - please excuse the slang. Ebony's haemoglobin was 5.2 & bilirubin 268 on the 27.5.99 & she got extremely tired and didn't have the energy to feed so a tube went back down her nose into her stomach and the doctors ordered blood for a transfusion. But the next day, 28.5.99,her haemoglobin went up a little to 5.6 (bilirubin 272)so they held off. We know that with a blood count for haemoglobin they allow a 0.5 margin for error either way, & with bilirubin it's a 20 point difference either way so even though it was only a 0.4 increase in haemoglobin it was stable, it hadn't dropped.
On this day we were also expecting a diagnosis, but that night one of the doctors came to see us & said that the results had come back inconclusive and they would start again on Monday. We were getting so frustrated as we're sure the doctors were, but they did tell us that they suspected that it could be an enzyme problem/deficiency but that there were a number of possible enzyme deficiencies ranging from a specialised diet to regular blood transfusions to fatal deficiencies - little did we know we were to receive the worst deficiency.
On the 31.5.99 Ebony's haemoglobin was 6.0, bilirubin 210 so they took all the lights off again. We were nervous this time because of what happened before, but everything went well & we were even allowed to bring her home for a day trip the next day, which was 1.6.99, her bilirubin was 201, no haemoglobin. Over the next couple of days her haemoglobin increased and bilirubin decreased & she appeared to be out of the woods and on 3.6.99 Ebony came home. The day she came home, which for us was the happiest day for us since her birth, her haemoglobin was 6.6 & bilirubin 186.
On 10 June 1999 when Ebony was 3 weeks and 5 days old Dr Lammi gave us the diagnosis that Ebony was TPI Deficient. Before her diagnosis we were given so many different case scenarios by different doctors during her stay at hospital, but this was by far the worst. We had been made aware that whatever was wrong it could prove fatal, but how do you ever prepare yourselves to hear & face something like that. We were given very little information. We were told it affects the muscles, we were also told of three different cases an Australian boy who is about 10 who can walk but uses a wheel chair, another Australian boy who Dr Lammi said died at the age of 2, and a Hungarian man who is about 30 and virtually unaffected. He also said there was information on the internet and there was research going on into TPI Deficiency. We asked if this was a life threatening condition, and he answered "yes".
The next day I was admitted to "Tresillian" for seven days to learn how to breast feed as it was very difficult for both myself & Ebony because Ebony had been tube fed and bottle fed the first 4 weeks. It was difficult for Ebony to learn how to breast feed. That day my stepdad Steve, brought over some information that he had gotten off the internet. This is when we realised just how serious Ebony's condition was, we read the prognosis for TPI Deficiency & our feelings escalated from anger, hurt and confusion to absolutely earth shatteringly devastated.
Since that day we have been living for Ebony and treating her like a normal little girl, which she is. She had to have her first blood transfusion on 30.6.99 which we dreaded, but it did her the world of good. Her haemoglobin that day was 4.6, & they took her up to 9.0. Three weeks later her haemoglobin was 8.6 & her bilirubin 37, the lowest her bilirubin's ever been. That was 20.7.99. Three weeks later again, 10.8.99, her haemoglobin was 7.3, bilirubin 44. We're due back to see Dr Lammi on 31 August, and we should be getting the results of our DNA aswell.
Despite everything, Ebony is the biggest joy in our lives. She is so funny & is growing so quickly. She has the biggest smile that lights up a room & her little laugh is so contagious. She really is the most wonderful & precious thing to us, & we love her more than life itself. We just pray that something can be done so she can one day have all of these feelings for her own children, & one day understand how much we love her.
Andrew, Kelly & Ebony."
Ebony is under the care of Dr Lammi at The Royal Children's Hospital, Sidney.
Ebony passed away peacefully on November 15th 2000
If you would like more information about Ebony and her family you can E-mail the Corscadden's by clicking here ====>Send E-Mail to Kelly and Andrew Corscadden
