It was the 18th of September 2008, I was very excited, the time had finally arrived! We new it was a girl and after 39 weeks and 6 days of the most perfect pregnancy I couldn’t wait to meet her.
Labour was slow and exhausting and after failed ventouse and forceps, she was delivered by emergency caesarean section. There was no cry at first, then to my relief I heard her; not very loud, just a faint cry. I asked if she was ok and there was silence. This silence spoke volumes and I knew something was wrong. I asked again if something was wrong and the midwife said she was ok, only her head was larger than normal and they would need to take her to the Neonatal Intensive Care Unit for monitoring, but first I could have a quick cuddle. When she was put into my arms she was completely covered, head to toe, except for her face – it was so perfect. She opened her eyes and stared at me…. at that moment time stood still. She was beautiful and in an instant I was so totally in love I didn’t want to let her go!
The next few hours and days were a bit of a blur, with each new update the news got worse and worse. She was very poorly and there was a bleed in her brain. They took our bloods and were running tests to find out what had happened.
We were taken to the NICU on the next floor. It was devastating to see her. She was covered in bruises, especially her head, and there were wires all over her tiny little body. We decided to name her Senen Loy, after two favourite local beaches. The Consultant Pediatrician arrived, sat us down and began to explain what had happened to our precious little girl. Tests had shown that her platelet count was very, very low, 33k and had dropped even lower to 28k. They had given her transfusions of platelets and her count had started to rise. He explained that very low platelets would cause the bleeding and bruising and that he suspected that is was due to neonatal alloimmune thrombocytopenia or NAIT. This was later confirmed from our blood tests. A CT scan of her head showed that Senen had had such a ‘catastrophic’ bleed that there was very little brain tissue left and after consultation with a ‘Neuro’ team there was nothing that could be done and there was no chance that she would survive. We agreed to stop further treatment and allow her to come home for palliative care and let nature take its course. Our hearts were ripped open, and for a long time I was afraid to sleep in case I woke to find her gone.
That was two and a half years ago and ‘our miracle’ is still alive and fighting. Later MRI and CT scans have showed that she had two bleeds, one about two weeks before she was born and another because of the pressure of the forceps. She has amazed us all but yes she does have major problems needing 24 hr care. She has hydrocephalus and has a VP shunt fitted; her hair has grown to cover most of this now, cerebral palsy, epilepsy which is still not under control, she is registered blind, we think she can see shadows and shades of red and green, global developmental delay, unable to walk or sit without support, feed herself or hold a bottle. But she loves her food and will eat most anything. She has recently been diagnosed with precocious puberty (due to damage to her pituitary gland) and has started regular hormone injections to control it. This has not stopped her though! She can smile and laugh and loves to be tickled and bounced up and down!!! has perfect hearing and loves music and children’s voices, she also attends the Child Development Center at a nearby school twice a week. The staff there are so lovely! She knows what she doesn’t like and is my cheeky little monkey!!!
Who knows what the future will hold.