After twenty-one intense minutes my daughter came into the world. It was six minutes past one in the morning and her arrival signified a life-changing event, for this was the start of life with a child with disabilities.
There was an uneasy feeling in the room as the midwife checked Aleesha over. I recall her asking a few questions that made me realise that all was not well. Did anyone in the family have very blonde hair? I could tell from this that the midwife thought there was a problem. My partner answered that there were several on his side of the family, so the midwife carried on with her checks and said no more, but I couldn’t shake off the nervous feeling that we would be told more.
I recall a young consultant coming to see me and Aleesha on the ward. The news about the white-haired newborn had spread fast and that morning I saw more doctors than a conference does, and sure enough this young nervous lady was trying to find a way to tell me that my newborn daughter had a problem.
Due to her very white hair I blurted out, “Is she an albino?” Clearly relieved, the doctor thought I knew about the condition, but I knew nothing. She said she couldn’t be sure, so next came the head consultant Dr MacFaul, a quietly spoken man but honest and direct. I came to really appreciate his support in the first couple of years after Aleesha’s birth.
Dr MacFaul didn’t have any answers, as albinism is quite rare but he told me that this was a genetic condition caused by a lack of pigment in the skin and eyes: white hair, pale skin, and pale blue eyes – not pink as some might think: this only happens in animals, although if Aleesha is caught in a certain light, her irises appear red. There are several variants to the condition but, if asked, this is the one most people would think of.
We were to be sent to an eye specialist to confirm diagnosis. Dr MacFaul left to make the referral. A nurse came over to finish her checks. As we were now allowed to go home, I didn’t know what to think, so I was telling the nurse what the consultant had said. Her reply was one of the hardest things I had to overcome as she scared me to death. Without knowing enough about albinism, she told me that if Aleesha had this condition I would have to keep her out of the sun, as it could give her serious burns and damage her eyes.
For the next six weeks, till I saw the eye consultant, I barely left the house without covering Aleesha with a two-hooded pram to protect her. I really didn’t know what I was doing and I felt that I had been abandoned to cope with this serious condition by myself. It’s hard to imagine that a throw-away remark could do so much damage to your confidence, but it did. I had other children, so I feel sure now that, as the doctors knew how this condition affected a person, they thought I would be fine for a few weeks. They were not to know that some stupid nurse with little understanding would be the one to give me information that was only half right.
I’m not entirely sure how I felt about Aleesha having albinism to begin with, as I didn’t really know anything about it. I just felt numb, cocooned in a shell, waiting for someone to open it up and tell me how, what and why.
This started with the eye consultant, Mr Simmons. He explained that part of the problem with albinism was that Aleesha’s eyesight would be affected, but that she would nonetheless have some vision. This was a blow. I had not expected it. He said that Aleesha would need lots of help with varying aids as she got older, to help her read and write and so on. She would never be able to drive, although in some states in America people with albinism can.
This was the start of countless appointments, for example to see skin specialists, to be given advice on how to protect her skin from the sun, as people with albinism are more prone to burning, which could cause skin cancer. There was also the geneticist to explain about recessive genes.
Over the next few months my time was taken up by appointments to see all the consultants, but each time I went Aleesha appeared to be subject to another condition. There were questions about her heart, for example. Then her progress was delayed by more than the expected level for albinism. Then she had problems with her hearing.
Aleesha’s first year was proving to be nothing but hospitals, doctors and consultants. I think my other children wondered where their easy-going happy mum had gone. I wondered too as I disappeared into a never-ending round of appointments .
By the time Aleesha was barely six months old I felt I had met every consultant and professional available on the National Health Service, but they all spoke facts and I was feeling hopeless at being a mother. I often was not sure what was helping, as nothing I did seemed to help Aleesha to progress.
By now all this was affecting Jessica, who attended every appointment, often missing nursery, as I did not have time to do both. When you have a child with a disability, however minor or major it may be, it can be easy to overlook your other young children’s needs, and for a little while this is what was happening for me.
Aleesha was now one year old, and I was sharing my concerns with the doctors who saw her regularly. I felt there was something else wrong. I voiced my concern that I believed she was autistic, but time and time again I was told it was due to albinism; she was just a slow developer. What did I know about autism? It felt like I was shouting out, but no one listened.
You know when you are sure of something, there is just a feeling deep inside that won’t go away. Well, that’s how I felt when the professionals told me that I was wrong and that Aleesha was fine. I just knew.
Dr MacFaul was listening, and by the time Aleesha was two, he too thought there were other problems. The first came with him telling me Aleesha had global delay; this just means that every area of development was now well behind what it should have been. She had no speech, no play skills and was still like a baby. At this point I confessed that since Aleesha had been born she had not slept more than two or three broken hours any day or night. I was exhausted.
Dr MacFaul decided that Aleesha could possibly have an unusual syndrome. She certainly had enough problems, so off we went on more test, more appointments and more consultants. I am not sure what glue held our family together, but as we limped through the first couple of years together, we realised how lucky we were being parents of a child with special needs, when we saw all types of other conditions much scarier than those we had had to face with Aleesha.
We hope to continue with Aleesha’s story next month.