All the usual checks/scans went well and my baby kicked all the time inside of me. I was booked for a c-section on Friday 26th September 2008. A few weeks before my husband and I were deciding on names. We choose 'Abisola' which in Yoruba means 'Born into love' (roughly translated). We decided that at 38wks I would have the caesarean section on the Friday so that our other two daughters would have the weekend (no school) to come and see me in the hospital. The plan was that after a few days I would be released to go home with our newborn. How wrong could we be!
I remember fainting on the operating table as they tried to administer the epidural for the 4th time into my spine. Next thing there was the tugging and pulling as they operated and took my baby out of my belly. But then the atmosphere went strangely eerie. ..
There was no sound coming from my babygirl...she was soooooooo small and had not one ounce of fat on her. I can recall whispering and concerned looks.
To cut a very traumatic story short, all was not well with Abisola. She was extremely weak and unresponsive. There were grave concerns for her health and physical appearance. She had to have many many tests and due to the fact that it was a weekend we had to wait for 48hrs for the results. I can truly say that those hours felt like years, there were so many questions that the doctors had no answers for. All that they could say that there was some kind of chromosomal abnormality but they had to wait for test results to be sure of anything.
On the Sunday blood results came back to say that Abisola was severely dehydrated and that her salt levels were so high/low (I cannot remember now which it was) that she could have a heart attack. She was then transferred to intensive care and tube-fed my breast milk. In the meantime my husband and I had to have blood tests to see if we had any genetic abnormalities that Abisola could have inherited.
I thought I would be in hospital for up to 5days as I would have to recover from my operation. Instead I spent 10days in hospital in a private room with Abisola. I remember the tv didnt work in my room and all I had was my music. I played Bob Marley's 'Three Little birds' so many times that it is now embedded in my brain for life! In my moments alone with Abisola I would look at her and just pray, pray for her to get stronger and for everything to be alright. I was so scared of being told that she was not going to live, but I had to put that in the back of my mind. I didn't care what she had, I just wanted my babygirl to live so that I could give her all the love I had inside.
After leaving hospital on day 10 we were finally home. My husband came with my two elder daughters and we caught the bus home, I remember when I got into my living room I burst out crying, it was such a relief not to be in hospital. But then the next day Abisola slept for 24hrs and would not feed. Weekend was coming up again and I knew that she needed to be seen by a doctor. He sent us straight back to hospital.
After various tests they discovered that she had a hole in her heart which added to her weakness. She was back to being tube-fed and was put on medication to help close the hole. She stayed on this medication for 7mths.
Abisola was unable to smile because her muscles were weak, all that she was able to do was lie flat on her back, her hands remained in fists because the tendons were tight. She started physiotherapy at approx 7mths old. She also had occupational therapy from birth until she was 15mths old. At one point she had 12specialists ranging from dietary, speech, vision, hearing,heart, hormones, urinary, genetics plus various playworkers/nurses.
In October 2008(Abisola was approx 3wks old) we had an appointment with the Genetic specialist at Nottingham City Hospital. We were told that Abisola had a 'Rare Chromosome Disorder' which..wait for it..meant that she had an 'Unbalance translocation between chromosome X and Chromosome 9 with xp22.1 deletion and Trisomy 9q33'!!!
Which in basic terms meant that two of her chromosomes did not form correctly, one part of one was missing and she had additional material on another. This caused many changes in her development. They were unable to tell us how she would progress, but they said there would be some forms of delayed growth, disability and possible behavioural issues. They had no data of any other child in the world with her specific type of chromosomal abnormality. It was not genetic but just the way that Abisola had decided to develop in my womb. They said it would have happened when she was 1st created, within weeks of me conceiving. We later found out that some miscarriages happen when the body rejects an abnormally formed foetus. Abisola was determined to be born and we were so glad that she survived against the odds. We were given the details of 'Unique, rare chromosome support group'. We have since become members and Abisola has been on the front cover of the magazine to highlight this disorder in the Black community.
On Feb 22nd something very magical happened. Her Godmother Carrie-Anne came over for dinner and to see the family. After dinner and when my other two daughters had gone to sleep it was just Carrie-Anne, my husband Falade, Abisola and me. Abisola sat on her stool, got up, looked at her Godmother and decided to WALK towards her, 3 steps soon became 6..then before we knew it Abisola walked across the room! Yes she side-stepped and was a little unstable but it was the 1st time she had, had the courage to let go of our hands and just go for it. It was such a special moment in time that I will never ever forget. My daughter walked for the 1st time aged 2.5yrs.
No one can prepare you for having a disabled child but only you can hold on to hope and faith that no matter what, everything will be alright!
Now we await Abisola's 1st words which I know will come..all in God's time.
One love and thank you for reading.
