chromosomal disorder compounded by a multitude of problems that may or may not be associated. She was tiny when she was born in January 2002. Only 2050 grams, or 4 pounds 10 ounces. The birth went quite smoothly, with our daughter Miriam by Lynneâs side as her âlabour supporterâ. Itâs one of the things I treasure about my large and affectionate family. Our children are all there for each other and there is a continuity in their relationships which often revolves around the joyous occasion of birth. When Ethan was born in the front room at Leura, Miriam was by my side the entire time, mopping my brow with a wet washer and watching in awe the long and often arduous process of birth. After me, Miriam wasthe first person to hold Ethan and they bonded like glue from that first moment. They still adore each other.
When Miriam had her first son, a homebirth, while she was a final year university student in Canberra, Ethan insisted on taking time off school to come to the birth. She desperately wanted him to be there. He was only fourteen and the midwife said afterwards that he was the most âtogetherâ young man she had ever seen helping at a birth. He came to the birth of Miriamâs next two sons and was sadly disappointed that he and Lynne were in France when her fourth baby boy was born in Bathurst.
Now here they were together again, this time for the birth of Ethanâs first child.
Lynne laboured well until it was almost time for the second pushing stage of labour. She was connected to a CTG machine which suddenly indicated that the baby was becoming distressed. It was decided to prepare Lynne for a caesarean section and while the midwifery staff were getting organised Lynne, being comforted by a very frightened Ethan and Miriam, suddenly felt an overwhelming urge to push. With a little encouragement from Miriam, she did just that and within minutes Isabella was born, tiny but to all intents and purposes perfect. Indeed, the paediatrician on duty pronounced her âperfectly formed and quite normalâ in spite of her diminutive size. However, Miriam was concerned even then that something was not quite right. The placenta, when delivered, was also very small. It appeared as though Isabella had not been nourished adequately during the pregnancy. Something was amiss.
Lynne was a devoted mother from day one. She had been told to âfeed and feedâ Isabella to try and compensate for her low birth weight. Night and day, every hour, she put that tiny baby tothe breast and although Isabella didnât have a strong sucking reflex she tugged at the nipple sufficiently for the milk supply to let down and trickle down her throat. She gained weight, slowly but steadily, and became more responsive as the weeks went by. But not nearly as responsive as she should have been.
When I saw Isabella during those early months she was always contented. Sweet-natured and not at all demanding. Her red hair formed a bright halo around her circular beaming face and she seemed like a delicate little doll rather than a robust newborn baby. She didnât cry but made strange mewing sounds and as she grew she started growling. We nicknamed her âtigerbabyâ.
The first indications of a problem were muscular. She just didnât seem to be using her arms and legs or holding her head up strongly like a normal baby. She was floppy and made no effort to support her weight when held up with her feet on your lap. Within the family, we started to be concerned but decided that discovering if there were problems with their daughter was a journey that Ethan and Lynne must make in their own time â that there was no purpose in us nagging them about her slow development when surely the community nurses and the paediatrician overseeing her would quickly detect that things were not progressing as they should. But it was not to be a quick response.
Part of the problem was, I am sure, that it would take Ethan
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