After a beautiful pregnancy and 12 hours of labour my daughter was born at 6.50pm as soon as she was born I knew there was something wrong. The doctors did not fetch her to me as I was expecting they just told me that something was not right with her. At 8pm I was told we had to be transferred to another hospital in the local area – I still had not seen my baby.
When we arrived at the hospital I was put on a ward and my baby was taken to the Special Care Baby Unit. I cannot describe the thoughts and feeling I was having at this time as still nobody had told me what was wrong and what was happening, I was in a state of panic.
At 9.30pm a doctor came to see me and asked would I like to see my baby of course I said Yes! I had not actually seen her since I gave birth to her. I will always remember the doctors words to me. “ Its like as if she has been burnt all over her body, her skin is very red and you need to prepare yourself for what you are about to see”.. This really upset me but he still carried on talking “ If she survives she will not be able to walk, talk and will be severely brain damaged”. My whole world fell apart.
I asked what was wrong my baby but they could not tell me , they had never seen anything like it. They just said they were carrying out tests. The doctor and sister of the ward took me to the SCBU and asked was I ok and was I sure I wanted to see my baby. They took me into the unit and she was in an incubator- she had no clothes on just a hat on her head, I just cried, I wanted to touch her/hold her but they would not let me. The doctor asked if I was ok, what could I say…..
I asked again what was wrong with her but he could not answer me he stated that they would know more when a specialist sees her in the morning. I was taken back to my bed without holding/touching her this was 11:30pm. A priest then came to my room and asked would I like my baby to be christened? I was not religious so I declined, however the Sister was with me and advised I should have her christened because she was really ill and most likely would not survive. Sarah was christened early the next morning when I had my family around me.
A specialist arrived after the christening and informed me that Sarah had Lamellar Ichthyosis. I had never heard of this. They explained a little bit about it (he read from a book) but did not give me any advice, support or guidance
I finally got to hold Sarah when she was 1 week old.
Sarah spent the month of her life in hospital, during this time the doctors were trying all different creams and oils on her skin. She was in my eyes, a guinea pig.
When Sarah was finally allowed home it was the best day ever because I never thought she would leave the hospital. We had to visit the hospital every week for the doctors to try different creams. We had to try different creams on different parts of her body to see which worked the best. We had to put the creams on 4/5 times a day. This routine carried on until Sarah was 2 and a half years old.
After 2 and a half years of seeing a dermatologist we were given an appointment to see a professor in Cardiff university Hospital of Wales. Sarah was then prescribed Acitretin. Sarah went back and fore there for a few years where they kept her in for a few weeks at a time and carried out biopsies, blood tests, photos etc.
One thing more than anything stands out during Sarah’s visits to Cardiff and that was when a little girl was playing in the corridor, her dad saw Sarah and myself coming and he quickly grabbed the little girl and took her back to her room and shut the door. This really upset and annoyed me.
One thing we found really helped Sarah was having her back rubbed. She used to sit on her Dads and Bampi’s knee and they used to rub all the thick skin off her back gently, Sarah used to love this and fall asleep as they were doing it.
We knew things would not be as bad as the doctors predicted when Sarah took her first steps, we did not think this would happen as her feet were so bad. Her feet were the worst part they used to crack and bleed all the time, they were so bad she used to have blood in her shoes.
Then It was the day every parent dreads the first day of school…. We were very anxious and very worried how the other children would react to her. I was on pins all day. Sarah came out of school crying that day because no-body would hold her hand at play time. I was devastated. I wanted to protect her and not send her back but I knew this was not the best for her. The next day she came out of school smiling and happy she had met friends and is still friends with them now.
I am so proud of Sarah and what she has achieved, some of the proudest moments I have are her going to University, gaining her Honours Degree, getting her job and working her way up to Team Manger and of course her wedding day.
I can not believe the life that Sarah has had knowing what the doctor said to me when she was born. How wrong could they have been.
I really wish that the ISG was around at the time Sarah was born as I can see the work they do and support they offer and really wish I had had this when Sarah was born I would not have felt so alone and frightened.