Meet the Kids: Amelia & Grace
Amelia and Grace are identical twins (MCDA) which means they share a placenta and it can be a high risk pregnancy. Our Midwive referred us very early on to obstetrics, and unfortunately we weren’t scanned and treated as we should and missed 3 vital scans at 14, 16, and 18 weeks despite asking for them. Our midwife stepped in and arranged our anatomy scan which was almost 3.5 hours long, we were called that night asking if I could come back in the next day for a few more measurements and assured all was well, so I went alone and was told something was wrong before I even got through the door.
We were told there was a risk of the twins having twin to twin transfusion syndrome, where there is an unequal share of the placenta and one baby gets all the goodness and the other almost nothing. Within a week, we were flown via air ambulance to Wellington for tertiary scanning then up to Auckland for laser surgery to attempt to separate the placenta, have 5L of amniotic fluid drained and give the girls a chance to survive. It was surreal. I had dropped my 14 month-old son at daycare one morning and then was away for the next week.
The day after surgery we were told we were stage 4 TTTS, Grace was hydropic with fluid around her brain, heart and stomach. (Stage 5 is fatal for TTTS baby/s).
We were allowed home but flew up to Auckland weekly for maternal fetal medical appointments, at 23 weeks we were told that Grace’s heart wasn’t forming correctly and they didn’t expect her to survive. She had a 3% chance of survival, Amelia only a 10% chance, and they had to get to 32 weeks gestation for cardiology to be able to attempt surgery on Grace’s heart. At our 25 week appointment they drained more fluid and kept me in as an inpatient. My waters broke in hospital 2 weeks later in the middle of the night. It was terrifying.
The girls were born at 27 weeks’ gestation – Amelia weighing 880g, and Grace 1300g – most of which was extreme swelling. They were so tiny that my husband’s wedding band could fit over their arms and legs. On day 3 the NICU consultant came in saying they didn’t expect Grace to make it through the night. We had to wait 5 days to be able to hold Amelia and 16 days before Grace was stable enough for her first cuddle.
Both the girls had ups and downs in NICU, on and off intubation, fighting infections, it was tough going. Simon would fly home to work and come up with Mason. He finally got to meet the girls when they were 5 weeks old.
When they were 8 weeks old, what would be 35 weeks gestation Grace finally hit 2kg and we could no longer wait for bypass surgery.
Grace has critical pulmonary stenosis, her right side was smaller, she had a faulty tricuspid valve, a large PDA, a hole in her ventricle (bottom chambers of the heart) and the entire heart wall was thickened. In her surgery they put a slit in her pulmonary valve, closed her PDA and created a hole in her atrium (top chambers) to help do the job of the pulmonary valve. She came off bypass poorly and crashed badly a few days later when they closed her chest. The surgeon was called back in at midnight, the head of PICU called, we had exhausted all options and by some miracle she once again defied odds and pulled through.
Our amazing NICU consultants and nurses arranged for Amelia to come and visit Grace daily in PICU until they were reunited 10 days later, a few weeks before Christmas.
The girls and I spent 3 months in Auckland NICU/PICU, 1 month in our local SCBU. Amelia came home at 99 days and Grace 108 days, both on home oxygen. When they were 4 months of age we spent our first night together as a family.
Both girls are heart kids and have chronic lung disease, I began noticing symptoms of cerebral palsy when Grace was 7 months of age but most medical professionals aren’t keen to diagnose before the age of 3-4 years’ old so we missed out on a lot of crucial early intervention therapy until her case was picked up by ACC at 3. We believe it was around the time of her bypass that she suffered brain damage. Grace also has global developmental delay and works with physical therapist, occupational therapist, speech language therapist and a dietician.
Cure Kids helps fund research around premature births, congenital heart defects, respiratory issues, developmental delays cerebral palsy - research in any of these areas can have a huge impact for the twins quality of life.
We need to be constantly be moving forward with our knowledge and developing new technologies to give our kids the best chance of long, full and happy lives. Doctors, scientists and researchers need to be focusing on improving outcomes for our kids, which is why Cure Kids funding is so important for improving the health of all children in New Zealand.
If you’ve been touched by Amelia and Grace’s experiences, help Cure Kids fund research to help make a big difference to the lives of children and families. Every Jams purchase helps as all profits are donated to Cure Kids. Alternatively, support Cure Kids with a donation here.
Main photo of Amelia and Grace by Eva Bradley