Xantha was born via elective caesaean section on Thursday 15th February, 2007 at Wodonga Regional Hospital. She let out a healthy strong cry when they pulled her out. When the paediatrician had a look at her, he noticed small blistered lesions around her fingernails, as well as a small one on her bottom. A flake of skin also came off her shoulder. He asked for permission to take photos of the lesions to send to the Royal Children's Hospital in Melbourne. While I was in recovery I was able to hold her and cuddle her, even put her on my breast for a feed, then while I was being taken back to my room they took the pictures to go to Melbourne.
The doctor came in after he had heard back from them, and he had to send her to the RCH that day, they thought she may have a skin condition called epidermoloysis bullosa (EB). I was so upset as my first daughter had to be flown down to Melbourne a few hours after birth due to undiagnosed breech and need of resuscitation after birth. I couldn't believe that they were going to take my baby away from me again, and I couldn't go with.
Peter drove down to Melbourne the next day, and I was allowed out the day after to go down as well. When we got there she was in a humidicrib, just to help keep her warm, she was covered in lubricant to stop her from rubbing her skin and causing more blisters. EB is a genetic condition which affects the glue in your skin and stops it from sticking together, causing blisters. There are a variety of types. We had been a week when we were told the type she had was called Junctional Herlitz, which can be quite traumatic for the baby, and approximately 87% of infants die before their first birthday from complications as the blisters occur not just on the outside of the body, but into the throat, the stomach and other internal organs shut down.
Needless to say, Peter and I were completely shattered, but we kept busy learning how to look after her so we could take her home, which we finally did when she was 3 weeks old. We were lucky to have her at home for 4 wonderful weeks until the week before Easter when she stopped sucking on her teat (I was expressing milk as she had trouble latching on to my breast, her mouth bled a lot from the blisters there.) She lost 700g in a week and we were sent back to Melbourne on the Thursday befoer Easter where she was treated for dehydration and infection.
By the following Tuesday, thing were looking up, she was lying there cooing at us, almost smiling, but the next night she had a down turn for the worse and was placed back in a humidicrib (until then she had been in a cot) for monitoring and oxygen as she was having trouble getting enough oxygen to breathe with. Thursday, the doctors sat us down and said they could tube feed her, but if they did, while it might increase her life span it would also increase her pain levels, and she had been in so much pain, I wish we could have done somthing more for it. So we decided to let her go, she was slowly getting worse, Sunday morning they rang and told us to come over from Ronald McDonald House as they believed it was nearly time.
My baby girl passed away in my arms at 9.50 on the 15th April, exactly 2 months old, surrounded by all her family as our parents had all come to Melbourne for the weekend to be there for us. We drove her home the next day, and held a beautiful funeral for her on the Friday. We will never forget the tiny footprints she left on our hearts.
