Story Dated: 30.01.10
About 5 and half years ago, my husband and I walked blithely intro a 2nd trimester ulstrasound for our baby-to-be, our 2nd child, mostly wondering whether she would be a boy or girl. About an hour later we emerged, shellshocked, bearing the news that our baby was showing some early signs of a serious brain abnormality, known as ventriculomegaly. This meant that the fluid spaces in her brain were enlarged (a condition known post-natally as hydrocephalus), the larger these spaces become, the less space there is for healthy brain tissue to develop. We were assured that the measurements were not wildly outside normal, and the problem would probably turn out to be nothing, just a variation on normal. We would, however, have to be monitored for the next few months, mostly via ultrasound, to see how the situation progressed. We were placed under the care of the imposingly named “Foetal Diagnostic Unit” at Monash Medical Centre.. We tried not to panic, and to assure ourselves that everything would be fine. We loved our baby already, I’m pretty much a goner once I feel those first little kicks. It would all turn out be nothing.
Over the next 6 weeks, our baby’s condition progressed rapidly from ‘just outside the range of normal’ to a prognosis that (while it varied with each new specialist we met) ended up at a 90% chance of some level of physical and intellectual disability. We were asked more times than I can remember to make the decision no parent-to-be could fathom having to make. We met with paediatric neurologists, paediatric neurosurgeons, genetic counsellors, pyschologists, numerous neo-natal specialists and fellows, nurses, doctors and my obstetrician (who was, thankfully, the only person who did not have an opinion on what we should “do”). We had countless ultrasounds, an MRI, a catscan, and later on, an amniocentisis (to rule out the handful of genetic conditions and chromosomal abnormalities which can be detected this way). At 26 weeks gestation, after 7 weeks of close monitoring and testing we knew this: she would have some big problems. What they would be exactly, nobody quite knew. We had reached the extent of what these highly educated people could tell us about the brain of this little person growing inside me.
And then we decided to just let our baby be. However she would come to us, that is how we would welcome her, and even if she didn’t come for very long, or was inside a body and mind that the world doesn’t consider ‘normal’, then we would welcome her, and love her just as much as we could.
This is the first line of the diary I began keeping a little later on in that pregnancy, once the shock had worn off and I began to think practically about the years ahead. “Hello my darling. I am writing this, your story, down for you, even though we don’t yet know whether you will ever be able to read it…..”
At 26 weeks we stepped away, as much as we could, from the (fantastic, devoted, highly skilled and well-meaning) intentions of the medical practitioners at the Monash Foetal Diagnostic Unit, who by their own admission could do nothing further to help until she was born. We were prepped for possible brain surgery a few days after her birth, and from then on the approach was to wait and see how severe her problems were when she was actually with us. We agreed to just 2 more ultrasounds during the 3rd trimester, just to make sure we had some idea what to expect at birth. We spent those months preparing ourselves, as much as anyone can, for what may lie ahead. I believe I owe a great deal to Applied Kinesiology, but that is another story. I also determined to make her birth a beautiful healing experience, and therefore also owe a great deal to Hypnobirthing, and Esther Swoboda-Thurneer. After a drug free (oh, ok, well apart from that hour where I refused to let go of the gas dispenser) birth the first words out of my mouth were “Oh, she looks just like a normal baby!”. An Ultrasound 5 days after birth showed her brain to be totally normal. A final MRI, or catscan I can’t even remember now, a few months later confirmed this: she was the miracle that medical experience told us was impossible.
On Friday this baby started school, and while she is not yet reading (I believe childhood is for being a child) we long ago gave up on visits to paediatricians to monitor her development. She is perfect, as any 5 year old is. I cried as much, but maybe also a little more, than any other mum does on her baby’s first day at school. I am so thankful. Her name, Mattea, means Matthew in Italian, which, in turn, means “gift from God”.
At 36 weeks we had one final ultrasound, to check her head circumference and to verify that it would be safe for me to try give birth naturally. The radiologist
told me she had incredibly long eyelashes, and she sucked her thumb. Seems she was right……