Born April 24th, 1999
After a routine USS ( at 30 weeks) on 23.04.02 it was discovered that one of our twin girls had an enlarged heart with an abnormal blood flow to her brain. The other wee girl we were told appeared to be well and in good condition.
Lincoln ( my partner) and I then went late that afternoon to Wellington Womans, where my pregnancy was assessed by Dr. Jeremy Tuohy ( who leads the high risk team) a doppler USS was undertaken and it was noted that the symptoms were consistent with AVM…but for some reason it was later incorrectly diagnosed at Twin to Twin transfusion syndrome.
The decision was then made by Jeremy Tuohy for the girls to be delivered by c-section the next day, after a dose of steriods it was agreed that we could go home overnight – gather all the bits and pieces I would need and to settle our 4 year old son Liam. Our teenage son was with friends and I a registered nurse working in the rehabilitation field for those with Traumatic Brain and Spinal injuries needed to expedite my parental leave with my employers.
We returned the next morning as agreed at 0700 for a delivery at 0900, which was then subsequently deferred to 1300. The morning was so long – I had two vigorous little girls moving about in side of me, at 30 weeks I really did not want them to be delivered so made the most of how it still felt having them still in-utero. At that time Phoebe appeared to be the most active twin, Ella quieter…they were both named at 20 weeks and I felt I knew them both well….different sleep patterns and levels of activity.
We were in theatre as scheduled at 1300, listening to the chitter chatter of the team who were discussing the back ground music – it was ‘Boyzones” latest album of the time. Ella was first to be delivered, so became Twin 1 at 1334 – she was a kilo and was very sick due to her prematurity – after a quick glimpse she was whisked away to the NICU. Phoebe, our twin 2 arrived 3 minutes later at 1337, with this tiny, tiny little cry, like a little kitten – she looked nothing like Ella and was more vigorous as I had guessed whilst pregnant – she was 1.2 kilos. Phoebe responded better than Ella, but obviously was also transferred to the NICU.
It was at this time that the twins were confirmed as being non- identicial, therefore Twin to Twin transfusion was an absolute impossibility. Both girls were on life support, Ella less stable than Phoebe, although Phoebe was now presenting with very large chest cavity, a pulsating pulmonary artery and she was in mild cardiac failure. It appears to us ( in hind-sight) that it could be likened to ‘flood gates’ being opened. We were still down in recovery and were not aware at this point what was happening with our twins or how unwell they in fact were. I had severe Asthma which needed to be managed at this time.
Phoebe was then assessed by a cardiologist who stated that she had an enlarged heart with signs of congestive heart failure, a brain scan then followed where a VGM was noted and diagnosed. Although stable it was decided to transfer Phoebe to National Womans in Auckland where she was to be seen by the NICU to enable them to assess whether any treatment could be offered to save her life. I could not travel so it was agreed that my sister would transfer with Phoebe in the air ambulance and we the parents would follow the next day once Ella was stable and I was well enough to travel.
At 0040 we received a phone call from Dr. Jane Harding a Paediatrician at National Womans advising us that Phoebe had deterioated during the trip and that they could not stabilise her….we were asked to agree to discontinue life support as she was now in Congestive Heart Failure….we agreed( and forever in hearts we will regret this) and Phoebe died minutes later in the arms of her Auntie Lee.
Then the phone calls started from the team at National Womans, they wanted to keep her for a post mortem, they would not accept our constant ‘no’ but finally did, as my sister carried Phoebe’s coffin onto the plane to bring her back to Wellington Womans, back to her family.
It was difficult to say the least, when we opened the coffin and held our very beautiful Phoebe, she looked so perfect. We took her down to the NICU where photo’s were taken with her twin Ella and her brothers. We had Phoebe with us at the hospital as we wished to wait until Ella was a little more stable before we took Phoebe home to be buried. Some 4 days later it was time, we took her to our home, friends and relatives all came to see her and she was in our bedroom with her parents over night. We wanted her just the once to be in what would have been her home. The next day Lincoln, I ,our sons and my sister Lee buried Phoebe out at the Avenue cemetary. Then it was a quick dash back to Wellington Womans as Ella was beginning to deteriorate again….and the expressed breast milk was running out.
It is still hard to describe our feelings at this time – it all seemed so unreal….like being swept off your feet by a strong wave and not being able to gain your balance for awhile. I was consumed with providing Ella with my milk as “breast is best” but as I was greiving for Phoebe I was finding it difficult to maintain a supply…but eventually did after 10 weeks hard work!
Ella was transferred to Palmerston North NICU ( the most caring, awesome wonderful team) at 33 weeks and was now only requiring nasal Cpap – she was discharged at 40 weeks weighing 2.5 kilos – the first 6 months home was a little scary with many trips back and forth to the hospital when Ella required assiatnce with her breathing. I returned to work after Ella had been home for 20 weeks, with Lincoln taking on the role of fulltime carer – Lincoln worked hard and well with the team enabling Ella to habilitate. Ella’s longterm prognosis was not great BUT!! today we have a 3.5 year old little girl who thinks she is Kylie Minogue!, loves to sing dance, is a wee chatter box, can swim like a fish and bosses all and sundry! We feel lucky to have her, but so unlucky not to have her twin. When we bought her first ‘fairy dress’ we wished we were buying two.
Phoebe has many roses planted in her memeroy in gardens around New Zealand by friends and relatives. We kept the seeds from the flower heads from the many, many bunches of flowers sent when we had the girls, there now grows many flowers from those bouquets.
We have moved 7 months ago from the North Island to the South Island to Central Otago – it has helped us move on and to be happier than we have been…we think less of the ‘what if we had not’. For those of you who have seen “Lord of the Rings” – Central Otago is “Middle Earth” and is every bit as amazing and beautiful as you see in the film! A place of such beauty is good for ones wellbeing – mentally and physically.
For us we think if we had lived in the Northern Hemisphere rather than the Southern then we may have gained better care and treatment….but we can now never answer that…..but it is truly good to hear of the positive, good outcomes for so many precious children around our world!