Edith and I were discharged from hospital the day after her birth with all the boxes ticked. I often think of the 5 weeks of blissful happiness that followed, that’s how long it was before we were told that something was seriously wrong.
Edith fed well and seemed extremely settled at home. She was suffering with jaundice but I was re-assured by the community midwives that this was completely normal for a lot of babies. When the jaundice stretched beyond 3 weeks, one midwife suggested a bilirubin’s test at the local Hengrove Hospital in Bristol to check her levels. The results of this were borderline and we were advised that it was best that Edith see a consultant at the Bristol Children’s Hospital (BCH) to make sure she didn’t need any further treatment.
At this point no health care professional we had seen had even mentioned that Edith was extremely floppy (although as this was my first baby, I didn’t realise either).
The day of the appointment came and feeling nervous we made our way to the BCH, a place that we didn’t realise at the time would become all too familiar. We saw a consultant who took further blood from Edith to test and gave her a physical examination. He asked several questions about Edith’s feeding habits, bowel movements and sleeping pattern. He exclaimed, after the examination “Everything here seems fine, you will be contacted about the results of the blood, but I am not concerned by the jaundice as it seems to be on the way out” and off we went. Cue huge sigh of relief!!
Until….A few days later I received another appointment by letter. Confused by this I telephoned the Hopsital, no one could seem to tell me why I had another appointment and I assumed it was to do with the blood results of the jaundice. At the time I was extremely naive to this world and attended the next appointment with a close friend after thinking it was not necessary for Dan to miss another day of work to be told what we already knew…that all was fine!
I couldn’t have been more wrong. I was met by a Neonatal Consultant that we would come to know very well. She gave me the devastating news that would change life forever. She told me that she believed Edith to have a genetic disorder and was likely to have some form of brain damage. I broke down in actual disbelief, she had to be wrong, she must have the wrong child’s notes. Not my baby girl. She continued to explain the reason for these beliefs and instructed that they must begin testing Edith to try and find a cause. I immediately asked my friend to call Dan and tell him to make his way to the hospital.
I left the hospital feeling optimistic, despite all I had been told. The more the consultant spoke, the more I didn’t believe a word that she was saying. Who is this woman? what does she know about my precious girl? I could not relate anything she was saying, to Edith.
Once we were home, Dan and I sat and looked at our little angel. This was a nightmare and any moment we were going to wake up. For days I expected a call from the hospital to say sorry for causing distress, but Edith is actually fine. That call never came.