Shea and Tiann. Shea is wearing the blue CPAP hat.
Essential Baby member Jannette tells the story of her twin boys Shea and Tainn.
I have a history of recurrent miscarriages. Once formally diagnosed I was prescribed medication which helped me get to second trimester carrying naturally conceived fraternal twins.
Things were going well until mid November when I was 24 weeks pregnant and we travelled from Sydney to the Hunter Valley for what was meant to be our last child free weekend away but turned into our last child free weekend. We were preparing for a romantic dinner when my waters ruptured. I knew that the survival rates at that gestation were only about 45-50%, depending on the hospital.
I was rushed by ambulance to John Hunter Hospital in Newcastle and given steroids to mature the twin’s lungs and medication to stop the labour, at about 8pm. The only available NICU beds were in Canberra, so my husband, Scott was sent home to Sydney to collect the things needed for a hospital stay and/or labour. As he arrived in Sydney at about 2am we heard that Canberra airport was fogged in, so we had to stay in Newcastle.
My contractions restarted around 4am. It was decided at 8am that the twins should be delivered by emergency caesarean and Scott was told to join us in Newcastle again. They would downgrade another baby to make room for us. My labour progressed quickly and they couldn’t wait for Scott to arrive so I was on my own when the twins were delivered, at 10:56 and 10:57am, nowhere near the 24 hours needed to mature their lungs.
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 but thinner than my little finger. Their skin was almost see-through, and they had no body fat.
Shea required resuscitation and was rushed straight to NICU. Tainn was temporarily breathing, so I was able to kiss him before he was also taken to NICU. When Scott arrived he went straight to see them. I have never been so scared, 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 given information on premmies and it was stressed how there was usually 48 hour period before the rollercoaster really started.
It really was a roller-coaster, with both boys requiring heart surgery to close a duct, and surgery for spontaneously perforated bowels, as well as other problems like Shea losing the fingertips from his right hand after a “long line” tissued. A long line is an arterial cannula used for IV nutrition. In this case the cannula broke through the artery and cut off blood circulation to his arm. Originally the risk was that he would lose his arm at the elbow but they decided to wait and colour started to return. His fingertips did not recover though and dropped off one by one over the course of a few weeks. When asked by a relative if we would sue for negligence, my response was "put it in perspective – without that long line he wouldn’t be here at all"!
I was in hospital for 16 days as I suffered two severe wound infections requiring lancing and IV antibiotics. I then moved to Ronald McDonald House (RMH) in the hospital grounds, where Scott had been living since the day after the birth. When a midwife suggested RMH to us my response had been "but that’s for families of sick children". I hadn’t realised that that was what we now were! Our lives had been changed forever.
We lived in RMH for 10 weeks over Christmas and New Year. I don't know how we would have coped without the practical and emotional support of the staff, volunteers and other residents at RMH, as well as the NICU staff. Even with the roads frequently closed due to the bushfires that summer, our families still managed the trip every few days. We were grateful for the support of friends who made the trip as often as they could too, one friend even visiting on Christmas Day!
It was nine days before I could hold Shea, 28 days before I could hold Tainn, and 42 days before Scott held either of them. Santa could only sit beside their incubators for their first Christmas photos. Tainn developed an infection on Christmas Eve that required an oscillating ventilator. He was not expected to make it to Christmas Day but pulled through. Needless to say that was yet another sleepless night for us.
Shea suffered a grade IV brain bleed in the first few days that resulted in hydrocephalus requiring an urgent shunt operation to relieve the pressure. There wasn’t a paediatric neurosurgeon in Newcastle and due to 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 he was still fighting, and while he was still fighting we made the conscious decision to give him the best quality of life that we could afford no matter what the outcome.
Tainn lost his battle on January 8, 7 weeks after being born, 2 months before he was due. 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. When we started the agonising calls to inform everyone of our loss, a lot of people thought we meant Shea, as Tainn was the stronger of the two, except for his tendency to get infections. Both boys were part of the INIS study, which looked at a possible way of preventing micro-premmies from getting infections. We won’t know the results for another year or so, but hope that for the sake of saving future babies that Tainn received the placebo, as Shea rarely suffers infections even now.
We delayed Tainn's funeral for 5 weeks, partly until we returned home to Sydney, partly as we thought we might need a double funeral. Thanks to the care of the JHH NICU team, and the availability of Telstra Child Flight and the NETS transfer team Shea made it to Westmead Kids for the shunt operation and the outcome is not as bad as we had been led to believe it would be. Shea attended Tainn's funeral on a leave pass, and was officially discharged two days later, on Valentine’s Day, two weeks before he was due. He is still tube fed and does have cerebral palsy, an intellectual disability, reflux and some sensory processing issues but each of his problems is very mild. It is only when they are combined that it becomes very complex!
Shea is now in Year 1 at our local primary school. We are extremely lucky that our school has an Inclusion Support program with 10% of the school population being identified with diverse needs, and has all the support mechanisms in place that this requires. Although enrolled in a mainstream class, Shea spends a couple of hours each day in a small group with a special education teacher. We have found this approach to be perfect for his needs, and he is thriving. Even with his rough start to life he scored in the middle band for his PIPS test in kindergarten, and is in a higher reading group than some students in his class without recognised needs!
Shea loves his sport and has tried swimming, gymnastics, t-ball, rugby league footy, and is currently enrolled in golf lessons. Although not showing any great skills in any of these areas yet, he would qualify for either Paralympics or Special Olympics so as a Sydney 2000 baseball official. I have my dreams for him. I took great delight in taking him back to visit JHH NICU when he was about 3 years old, and showing the Doctors that the child chasing his cousin along the corridor was the same child that they did not believe would even walk!
Talon
Falling pregnant with Talon was a pleasant surprise, and I was thankful for my new Obstetrician. She took my fears seriously, arranging fortnightly scans and antibiotics in case it was incompetent cervix or an infection that caused my previous pre-term labour. These are the two most common causes of unexplained pre-term labour.
I attended antenatal classes very early, as I wasn’t going to miss them again! During the delivery suite tour I broke down as the midwife was explaining where the babies and fathers went while the Mum was in recovery if she had a caesarean. It took until the next day to work out that what scared me so much about another caesarean was the thought of being separated from my baby.
At 33 weeks I went through the emotional stress of being a consumer representative at a medical conference to update the “NSW / ACT guidelines for perinatal care at the borderlines of viability”. After considering the medical, legal and moral views, the attendees decided that the existing “grey area” of 22 – 27 weeks should be maintained, where it is okay to provide care (in the form of life support and other medical interventions), but also okay not to provide care, depending on each individual situation.
After a couple of false starts I went into labour naturally at 39 weeks and 4 days. Talon was born the following day by VBAC (vaginal birth after caesarean) after the midwives had to break my waters. Thanks to my Doctor and midwives, and my husband’s support, I was able to achieve a full term pregnancy - something I had started to doubt I would ever achieve - and had an absolutely perfect baby. Talon looked the spitting image of Tainn when he was born with a full head of strawberry blonde hair. Very fitting.
Tainn Hunter Classic
As a result of the fantastic support we had from Ronald McDonald House and Telstra Child Flight as well as the amazing research into premature birth conducted by the Hunter Medical Research Institute, we now hold an annual softball tournament, raffle and auction, with all proceeds going to the above charities; it is called the “Tainn Hunter Classic”, in memory of Tainn. Since it’s inception in 2003 we have raised over $50,000 for these worthwhile charities. The 2009 Tainn Hunter Classic will be held in Canberra on September 25-27 and donations of prizes and auction items are now open. See www.tainnhunterclassic.com for further information.
National Premmie Day is 31 July. Visit www.prembaby.org.au
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