In loving memory of Mercy Grace Beves

Mercy’s Story.

Monday 27th Mar Mercy Grace Beves was mine and my ex-wife’s second born child of four. Her pregnancy journey for both of us was very fraught, highly emotional and stressful. There was a vaginal bleed at 6 weeks, and the ultrasound showed an embryonic sac, but no heartbeat. A subsequent blood test through our GP a week later showed her HCG pregnancy levels were still increasing, and another ultrasound showed her heartbeat.  We were over the moon, and told to come back at 11 weeks for another scan.  We went for the scan on a Friday, but when the stenographer took longer than normal, then asked if she could perform a transvaginal scan, we knew something was wrong. Our GP then informed us that it looked like our little girl had a condition known as Anencephaly, but wanted us to see a specialist the following Monday for a high resolution scan to confirm it. We spent the weekend absolutely peaking, then had it confirmed that Monday. Our world just fell apart. The doctor that gave us the confirmation (not the specialist) tried to push us in the direction of termination, but as we were both committed christians at the time, decided to play the hand we’d been dealt, and carried her to term. Anencephaly is a neural tube defect, and is the most severe form of Spina Bifida. Most cases of SB are where there’s a hole somewhere along the length of the neural tube; Anencephaly is where the very end or “top” of the neural tube doesn’t close; meaning she would be born missing a portion (usually the dome and back) of her tiny skull. Most babies with this condition will usually spontaneously abort, and even if they make it to birth and then through birth, are usually born sleeping, or will pass within anywhere from a few minutes to an hour or two. We were given very little information about her condition, but a friend of ours who worked in hospital admin did some research for us and gave us a much fuller picture. Obviously she was classed as high risk, so had regular fortnightly midwife appointments to monitor the pregnancy. As I was the sole wage earner and working in Sydney, I was only ever able to attend one or two due to work commitments, and I used to dread every second Wednesday as I’d get a phone call from my distraught wife, usually from something a doctor had said to her. We learned the hard way that we were in a very grey area, and that doctors (or at least the ones she had to see!!) only liked to deal in black and white. I’d like to just say that the midwives were absolutely brilliant - sadly the same could not be said for the doctors on team at the hospital!! We had to fight to be allowed to give her a natural birth; it was only that the head gynecologist had gone on extended leave and his stand in agreed to it that we were able to make it happen. Labour was induced at 40 weeks at around 6:00pm on a Sunday night, and she was born…..ALIVE……the following morning at 9:00am on the 24th of September, 2007, weighing in at 4 lbs, 5 oz!! She was so tiny and in our eyes perfect, despite missing the dome of her skull. By this time the head gynecologist had returned from his leave. He came strolling into the birthing suite about half an hour after she was born, walked over and looked at her, then looked up at us and said (and I remember this as clear as day!!) “Brave, but foolish.” If not for my ex’s support person holding me back, I would’ve decked him on the spot, but he quickly got the impression that it would be beneficial for his health if he left the room right there and then!! We never expected to be able to take her home, but after 24 hours she was still going strong, so we asked to leave, which we were able to do. This saw me charging around like a madman setting up bassinets and borrowing another car seat for our 15 month old to use!! With a non-stick dressing and a tiny beanie on her head, she just looked like a really premature baby. We decided not to just sit around and wait for her to die, so we made the effort to go places with her; the beach, the shops, to church, to visit family, go out for lunch, walk through some local gardens, anything we could think of!! Mercy ended up back in hospital on the orders of the at-home special care midwife around 48 hours after we got home with severe jaundice, but 36 hours of phototherapy soon had her all better. She stayed with us for 5 weeks, 4 days, 18 1/2 hours, before she passed away in her Mummy’s arms at 3:30am on Saturday the 3rd of November, 2007. She was only with us for a short time, but we loved her a  lifetime in the time we had. I’ve always said that I wouldn’t change any of the decisions we made about her and for her, but I couldn’t go through that again. It was, at the same time, the most uplifting and horrible time of my life. There is so much more I could add to this, but I think that’s enough for now - even after all these years, the pain hasn’t faded. I’ve just found that as time has passed, I’ve gotten more used to its burden.  Share