Becoming a parent is without a doubt a life changing experience, even when you have a normal pregnancy and a healthy baby. The life changing impact of having child goes off the scale when you unwittingly get dropped into the role of a medical parent. Stacey Kale is one of those medical parents.
Stacey and her husband Simon are parents to identical twin girls Grace and Amelia. For many months these two wide eyed babes have filled my Instagram feed, and it has been absolutely incredible to watch their journey from such critically unwell babies that were confined to the hospital for a very long time, to gorgeous and bubbly little girls who now appear to be very well indeed. I have recently had the pleasure of chatting with Stacey about her girls, and the fact that although they appear to be well, both girls still have a lot of challenges to overcome with regards to their health.
Stacey was fortunate to have not suffered with postnatal depression or anxiety but it is something she was very aware of. Grace and Amelia were delivered at early at 27 weeks, and that left almost everything that happened with the girls out of Stacey’s control. The stress she had to cope with knowing just how fragile the girls lives were, is more than many of us will ever experience, and on top of being away from home with critically unwell premature babies, Stacey also had her son Mason to think about.
The whole time I have been following Stacey I have been in awe of her positivity and her absolute dedication to giving her children the very best quality of life. She has had to come to terms with a total overhaul of her family life, yet she still takes the time to share so much of her journey and inspire countless other mums who are in similar situations. On top of this she has also been actively involved in fundraising and support for Cure Kids, and Grace and Amelia were invited to be poster kids for Heart Kids Hawkes Bay’s 2019 Braveheart campaign.
I am extremely grateful that I have the opportunity to share some of Stacey’s journey and provide some insight into her life as a medical parent, including how she manages to take care of her own physical and mental well-being, in amongst all the other demands of being a mum to three littlies.
TELL ME A LITTLE ABOUT YOURSELF, YOUR FAMILY, AND YOUR BACKGROUND.
I was born and raised in Hawkes Bay. I lived in Australia for several years in a different life, but returned home to be close to my family. My husband Simon and I met 5 years ago. We moved in together pretty quick, got engaged on our 1 year anniversary, married with a baby on the way a year after that. Now we have three kids under three - Mason (3) and identical twin girls Grace and Amelia (20mo/17mo corrected).
DO YOU WORK OR ARE YOU A STAY AT HOME MUM?
I am a mostly stay at home Mum. I returned to teaching full time when my son Mason was 8 months old and now only do the odd relieving day when all the stars align...healthy kids, no appointments and Grandma free to babysit.
IT HASN'T BEEN PLAIN SAILING, HEALTH WISE, FOR AMELIA AND GRACE. CAN YOU TELL ME ABOUT WHAT YOUR GIRLS HAVE BEEN THROUGH?
At our 20-week anatomy scans, we found out we were showing signs of Twin to Twin Transfusion Syndrome, which is where identical twins sharing a placenta and have an unequal share. Meaning one gets all the blood flow and nutrients and the other misses out a bit. I remember calling Simon saying something was wrong. He met me at the hospital where we were told about the unlikelihood of it being TTTS but more scans were needed to rule it out. Within a week we were scanned 3 times in Hawkes Bay, air ambulance to Wellington, scanned again, then air ambulance to Auckland for further scans, laser surgery and fluid reduction to give our babies a chance of survival. We were Stage 3 TTTS.
The day after our surgery, a scan showed that Grace had developed hydrops fetalis (fluid) around her brain, heart, and stomach. Her heart was showing signs of heart failure and we were upgraded to Stage 4 TTTS. Stage 5 is losing one or both babies. I stopped working immediately and was on limited rest. I was recommended to not lift our son who was 14 months old at the time.
Each week after that, we were flown to Auckland for scans with the Maternal Fetal Medicine Specialists. Each week brought more bad news for Grace. At 23 weeks her heart was showing that it was no longer forming correctly and we were told she would be unlikely to make it. For the cardiologists to be able to help her she had to get to 32 weeks gestation, and that was unlikely with how sick she was. We met with social workers to learn the process of what happens if your baby is born not breathing or if your baby is born and passes shortly after. It still feels unfathomable that mothers and fathers have to face those conversations. My heart stops when I have to think about it.
We were given our options, to terminate Grace or to wait and see which could put Amelia in danger. We decided to wait and see for as long as we could, as long as there was no additional risk to Amelia we would keep going. It made no sense to me as Grace was the one I could feel moving so strongly - she was fighting hard and I decided to fight with her for as long as she was.
At our 25-week appointment, things were looking bad again. We had another fluid reduction and I was not allowed to leave Auckland. I spent a few days in the hospital before they let me go to the Ronald McDonald House to be with my family and be monitored as an outpatient. At 26-weeks my waters started leaking slowly. Another reduction was needed but deemed too risky. My cervix was shortening. I was admitted to the hospital once again.
That night at 3am my waters broke. I was petrified. 27-weeks was too early. I needed 5 more weeks. Grace needed 5 more weeks. I called Simon who came right away and a large team began to assemble to deliver the girls. Grace was born very swollen at 1300g and measuring 35cm at 5:58am,and Amelia 2 minutes later weighing 880g and measuring 35.5cm. They were both whisked away to be worked on. I didn’t hear any cries just the busyness of people rushing to save them. I lay there crying silent tears while my mind raced.
I don’t remember the first time I saw the twins. I remember feeling like I had walked into a different universe in that NICU (Neonatal Intensive Care Unit) room. The girls were so sick and small. There were wires and tubes, and medicine and machines everywhere. I had to learn how to touch the girls safely so not to damage their delicate skin. Grace was heavily sedated as she was in so much pain and so so unwell. At one stage they didn’t expect her to last the weekend. All I could do was pump every 3 hours ready for when they were strong enough to have milk, and learn the ropes of NICU life.
On Day 5 I was able to hold Amelia for the first time. On Day 16, Simon flew home with our son Mason, and that afternoon I was able to finally hold Grace.
I slowly found my place in NICU. I got to understand all the machines and what the numbers all meant. How to draw up medicines and milk. How to do cares on the girls every 4 hours. All while adhering to a strict 3 hourly pumping schedule. I was able to hold the girls once a day, if they were up to it, for a few hours each time. Simon and Mason would fly back up every weekend and we would juggle our very separate lives - hospital life with the twins and the real world with Mason.
There were ebbs and flows of wellness and reaching milestones, to crashes in the night and blood transfusions to help fight infections. NICU is a twisted roller coaster where you can never fully relax as things can change in an instance.
When the girls were 8 weeks old and Grace finally hit 2kg it was time for her open heart bypass surgery. The surgery went well, she did struggle coming off bypass which caused a little concern. When they closed her chest 3 days later, things turned really bad. The surgeon was called back in at midnight. The head of PICU (Paediatric Intensive Care Unit) was called. There was nothing they could do. They had expended every option. All we could do was hope.
By some miracle, she proved everyone wrong and came out fighting. I really struggled during this time as I had Mason in Hawkes Bay and I hadn’t seen him for 5 weeks due to illness and Grace’s upcoming surgery. Amelia was up in the main hospital on the 9th floor, and Grace was down in the ‘basement’ of Starship fighting for her life. My NICU nurses and consultants saw this and arranged for a nurse to bring Amelia down to visit for an hour a day. This meant the world to me. I got to see the girls lay next to each other for the first time ever. I believe this is what helped Grace continue to improve. This is what gave me the strength to keep going.
About a month later we were transferred to our local SCBU (Special Care Baby Unit) and a month later the girls were home, a week apart, oxygen tanks attached and an NG tube for Grace. After 108 days we were finally all home together.
Both girls suffer from extreme chronic lung disease, both are Heart Kids. Amelia we have to monitor for high blood pressure as she has a narrowing of her aortic arch, and Grace has severe right ventricle dysfunction, dysplastic tricuspid valve and pulmonary valve, muscular ventricular septal defect (which seems to be closing over time) and during her heart surgery, they had to put a hole in her atrium to help her pulmonary valve work more effectively. Grace has less oxygen than others in her blood due to the plumbing of her heart and can go dusky blue if she gets too upset. She is also showing signs of mild cerebral palsy which we are undergoing therapy for currently.
We have to be very careful of germs and sickness as common colds can do real damage and be life-threatening to the girls, especially with our first winter off oxygen.
They are delayed in their gross motor skills which can be pinned back to being born so early and having so many hurdles with their health to work through. We are getting there slowly but surely.
I'm sure you can tell already how incredible Stacey's journey has been so far, but it definitely too long for one post! You will find chapter two here.
First published in 2019