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“Wow.. she can sit unaided,…laughs, giggles, baby talks, loves throwing anything…”
Mollie Ella Grace Foster, Trisomy 18, 8/12/2004, New Zealand
Mollie Ella Grace.. our 7th child, born with full Trisomy 18.. is now 7.6 years old and will turn 8 on the 12th August 2012. Mollie was born at 36 weeks via c-section and weighed 1890 grams.
Mollie had open heart surgery at 9 weeks old, to close a VSD and ASD.. things didn’t go to plan, which was a 4 hour straight forward operation, but it was 8 hours before we saw Mollie, they were having trouble with the pressure in her lungs and couldn’t get her of the by-pass machine, Mollie ended up coming out of surgery on ECMO a machine which works for the heart and lungs, she had this on her for four days, Mollie spent 11 days in intensive care, it was during this time a nurse commented on Mollies small mouth and high pallet, they had a genetic specialist again reveiw Mollie, they decided to do a chromosome test. The genetic specialist had seen Mollie at 2 weeks old as she was small and had low set ears, and slight dismorphic features, but found nothing striking. It was from these tests we found out at 78 days Mollie has full Trisomy 18.. wow that day our lives changed forever.
We took our darling baby home with palliative care to your 2 sisters and 4 brothers, we took her everywhere, showed her all we could and loved her every second, it was a very dark time, thinking about what colour coffin Mollie would have, how would I be able to support the other children with their grief when Mollie was to leave us, the months passed and Mollie kept on living.. not without many appointments to doctor and hospital, at 1 year old Mollie spent her birthday in hospital for 2 weeks with pneumonia and was very ill, but again fought, at 2 years old again Mollie was ill in hospital, and again fought… since those early years Mollie has kept better, she had a mickey button put in at about 18mths, she drank from a special bottle and had even been eating baby food and gaining weight but when she had the pneumonia at 1yr old she never went back to eating and is nil by mouth now by her own choice.
Mollie will be turning 8 this year.. Wow.. she can sit unaided, doesn’t crawl or walk or talk, but knows us and close friends, laughs, giggles, baby talks, loves throwing anything, can wheel her wheelchair, hmm now there is lots of dents in the kitchen appliances, can play with alot of interactive toys. Mollie is on low flow oxygen .25 overnight and just had a very good test results from an overnight study last week.. We home-school Mollie. She also has a younger brother Quinny who just turned 6years old last week.
Yesterday Mollie had an appointment for xrays to check the curvature in her back, at this stage she is doing okay, but in time they will look at putting rods in Mollies back.
We live in New Zealand and only know off mosiac trisomy 18s who are still living.
We have stopped asking the ” Why me” questions and just got on with living our lives everyday, not that the dread of losing our daughter ever fades from the back of our minds, it is always there.
With love to all Mummies and Daddies of T18 and all trisomy children. xoxo