In Australia, around 57 babies are born prematurely (before 37 weeks) each day. EB member Jannette tells her story about her twin sons, who were born at 24 weeks.
I have a history of recurrent miscarriages, but once I was prescribed medication I made it into my second trimester, carrying fraternal twins.
Things were going well until mid-November 2004, when I was 24 weeks pregnant. We were in the Hunter Valley for what was meant to be our last child-free weekend away, and I was preparing for a romantic dinner when my waters ruptured.
I was rushed by ambulance to John Hunter Hospital in Newcastle, where I was given steroids to mature the twins’ lungs, as well as medication to stop the labour, at about 8pm.
But my contractions restarted around 4am, and four hours later it was decided the twins would have to be born by an emergency caesarean. Scott had been sent to our home in Sydney to collect what I’d need for a hospital stay, and as we couldn’t wait for him to return I was on my own for the boys’ births.
They weighed just 740g and 620g, and their heads and bodies would have literally fitted on my hand if I’d been allowed to hold them. Their legs were the same length as my little finger, but thinner. Their skin was almost see-through, and they had no body fat.
We named one of the baby’s Shea – he required resuscitation and was rushed straight to NICU. His twin, Tainn, was temporarily breathing, so I was at least able to kiss him before he was taken to NICU, too.
I have never been so scared as when I was lying in recovery alone, not knowing what was happening with my boys. By the time I saw them they were both ventilated and covered in monitors and tubes. We were then given information on premmies, and it was stressed how there was usually a 48-hour period before the roller-coaster of medical problems started.
And it really was a roller-coaster. Both boys required heart surgery to close a duct, and surgery for spontaneously perforated bowels. Shea also lost the fingertips from his right hand after a long line tissued. A ‘long line’ is an cannula used for IV nutrition, and in his case, the cannula broke through the artery and cut off blood circulation to his arm. His fingertips didn’t recover, and dropped off one by one over a few weeks. When a relative asked if we would sue for negligence, I replied, “Put it in perspective – without that long line he wouldn’t be here at all!"
It was nine days before I could hold Shea, and 28 days before I could hold Tainn. It took 42 days before Scott held either of them.
Tainn developed an infection on Christmas Eve, and he wasn’t expected to make it to Christmas Day. Needless to say, it was yet another sleepless night for us – but he pulled through.
Still there was more to come: Shea suffered a grade IV brain bleed. It lead to hydrocephalus, requiring an urgent shunt operation to relieve the pressure. There wasn’t a paediatric neurosurgeon in Newcastle, and due to his continuing heart and lung problems Shea was too ill to be transferred for almost 10 weeks. His brain damage was so great that it was strongly recommended to withdraw treatment on three separate occasions. But Shea was still fighting, and we made the decision to give him the best quality of life we could, no matter what the outcome.
Sadly, Tainn lost his battle on January 8, seven weeks after being born, two months before his due date. He developed a second bowel perforation, this time from necrotizing enterocolitis, a gut infection common in micro-premmies. On this day I had my one and only double cuddle, and the boys were allowed to share a crib and hold hands. Tainn was only 53 days old.
We delayed Tainn's funeral for five weeks, partly until we returned home to Sydney, partly as we thought we might need a double funeral. Thanks to the care of the NICU team, and the availability of Telstra Child Flight and the NETS transfer team, Shea made it to Westmead Kids for the shunt operation. Shea was also able to be present for his twin’s funeral, and was officially discharged two days later, on Valentine’s Day, two weeks before he was due.
I later fell pregnant again, and after a few false starts went into labour naturally at 39 weeks and four day. Baby Talon was born by VBAC (vaginal birth after caesarean). He was perfectly healthy and looked the spitting image of Tainn when he was born, with a full head of strawberry blonde hair. I thought it was very fitting.
Now, Shea is 10, and he has made amazing progress for someone the doctors doubted would ever be able to walk, talk or eat on his own. It has been tough at times – he has very mild cerebral palsy (he currently wears a brace on one leg, but plays all sports), a borderline intellectual disability (he is in a mainstream class but spends time with an aide for a few hours a day), and was tube fed until age seven (but is now 100% oral). Because of his lost fingertips, he still has trouble with fine motor activities such as writing, doing up buttons and shoelaces, etc. But his main ongoing issue is sensory processing disorder. This is very common not only among premmies, but with any children who experience high levels of medical intervention as a baby.
He really is our little miracle, and whenever I get down about something I look back at some of the earlier medical reports and see how far he has come. I’m so super proud of him.