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Ashley's Story
"Ashley is now nine years old..."
She is our little CMV girl who cannot sit unsupported, walk, talk, or feed. However, she is in no way "useless" - of our three children she has taught us the most about the true values in life and unconditional love in its purest form.
Ashley, our second daughter, was born on May 14, 2001. The pregnancy went well initially. At the 22 week scan a few issues with regard to inconsistent growth and rigidity were picked up. We were advised that this could potentially indicate "Downs", but was not a very strong indication, so could also be quite normal. We were given the option of having an amnio done that day, in order to make a decision about possible termination. If the amnio was not done immediately, it would be too late for termination as an option. This was the first time I had even remotely had to contemplate this kind of decisions - but I knew that for me it was not even a choice - our baby was too much a part of our life already.
Our Obstetrician seemed confident that all was fine, and so we gave it no further thought. However, towards the third trimester, when the scans could better pick up brain detail, etc, a problem with fluid on the brain was picked up. This was thought to be Hydrocephalus, but doctors were confused as to why the head size was small, instead of unusually large, as is normally the case with Hydrocephalus. We were told not to worry too much as this would be easily treatable at birth and I was sent to the "top" Radiologist in the area for weekly monitoring scans, followed by weekly OBs check-ups.(At no stage was CMV ever considered by any of the doctors, or mentioned to us - we were totally unaware that it existed.)
Six weeks before due date, the blood flow through the placenta became insufficient and an emergency caesarean was arranged. We discussed what the "ethical" option would be if our baby was unable to breath alone, and decided that with all other complications evident, we would not put her on a ventilator if her lungs couldn't cope at birth. I remember so clearly being sent straight to the Delivery Ward from the doctor's office, and lying on the bed praying for anything but the loss of this baby. I knew that we could cope with any other outcome. Ashley was born by caesarean section at 5pm and she received an apgar score of 9 (was jaundiced). She was tiny, but her lungs were strong, and the obvious sign of a virus was finally picked up due to the rash all over her body. She was placed straight into an incubator, which became her home for three months. The Pediatrician confirmed the next day that she had cCMV. Our ped is an amazing man - a true old style doctor who became a father figure to us. I remember feeling such guilt about being the "carrier" of the virus - and he said to me that it was not my "fault" - it was like standing on the pavement and being hit by an out of control car that I didn't see coming.
Since then we and Ashley have been through so many highs and lows. Medically, she is severely affected/disabled with huge areas of damage and calcification in her brain. She has CP, limited head control, epilepsy, feeding tube, and is non verbal. She also battles with all the associated issues such as constipation/bladder infections/sleeping issues/low immunity. She is slowly developing scoliosis that we are treating as best possible, without surgery. Her left hip has been a major problem, and despite lengthening and release surgeries, as well as bone surgery, correct seating, standing, physio, etc, she has developed hip displasure with a hip that has dislocated. She has been in a hip brace/spica for the past seven months and finally the hip seems to have stabilized.
She cannot see very well and is profoundly deaf, but has had a cochlear implant. She definitely hears with this, but what she translates we will never know. I remember the surgeon who performed the implant being totally surprised that we would consider such a procedure with such a huge area of damage to her brain. All we could think of was the benefit of her at least being able to hear - and when her switch on occurred she giggled with absolute glee at each sound that was made. That was one of the most rewarding moments of my life.
Ashley also developed hydrocephalus at 5 years old, and was in a coma for a couple of days before this was diagnosed. She underwent emergency brain surgery, which unfortunately was unsuccessful, and so she had a shunt inserted.
Emotionally, spiritually, socially, financially - all aspects of our family's lives have been altered dramatically with Ashley. I have alternated between the most incredible emotional highs and times of utter despair and sleep deprivation. Our marriage has had moments of huge strain, but has really strengthened, and Ashie's relationship with her Dad is incredibly special. Our other two children seem to be especially empathetic and kind, which I believe is partly attributable to their experiences with their sister. Socially, I have battled to relate to other parents, and I am trying to become less judgmental and dismissive of others who don't understand our situation, but I now realize, can't really be expected to. I have grown to appreciate my incredible parents more than ever. Finances have been a strain, our lives are definitely more restricted - travelling is very limited as it is just hugely stressful with Ashley and adequate respite care facilities don't really exist here. Overall, however, as cliched as it sounds, our lives have been enriched enormously by Ashley and she is loved by us and loves us back unconditionally.
- Shared by her mother, Moray