Harriet was born with Neurocutanious Malanocytosis and Dandy-Walker Syndrome of which Health Insurance won't cover.
Canterbury
Harriet’s parents Rob and Adiella, New Zealanders currently living overseas, went into their final 35 week scan with excitement for their soon to be little girl. They were devastatingly delivered the news no parent should ever have to hear; On the scan Drs said her brain had severe fluid build-up (Hydrocephalus) and was under-developed (Dandy-Walker Malformation) to the point they did not think she would survive. It came as a total shock, as her previous scans had been perfect with no sign of any issues, and therefore heartbreaking news to receive.
A plan was made to deliver via C-section at 38 weeks due to safety reasons. Adiella had the routine preoperative COVID19 test and to add insult to injury it returned positive. The C-section was postponed in the hopes that a negative test would occur. Miss Harriet had other plans however and a few days later Adiella went into labor and Harriet Elizabeth Stewart was born via C-section under isolation conditions on the 10/9/20. She miraculously arrived crying her little heart out, which Adiella said was the sweetest noise she has ever heard as it meant she was breathing on her own.
Harriet was immediately taken to NICU and placed in isolation while Adiella remained isolated on the maternity ward, unable to meet her. On delivery they discovered that Harriet also had Neurocutaneous melanocytosis; which causes both neurological deficits as well as large, dark, melanocytic lesions on her body. This condition, in combination with her known diagnosis of Dandy-Walker Syndrome, is reported in less than 20 known cases worldwide.
The following two weeks were bitter sweet; Harriet was defying the odds and miraculously continuing to breath on her own and nearly exclusively bottle feed with her mother’s milk. Drs had said she would never be able to do either on her own. Unfortunately, Adiella’s COVID19 repeat tests kept returning positive so she was kept in isolation at home and could not visit Harriet. Rob was left solely to meet with Drs, make decisions around her care and sneak video calls to Adiella while visiting Harriet.
Whilst being kept in isolation at NICU, Harriet underwent an MRI scan to assess the fluid in her brain and this indicated the immediate need for a shunt surgery. This procedure involves inserting a line from her brain to her abdomen to drain excess fluid and was conducted on the 23rd of September, when she was 13 days old. The surgery had no complications and Harriet’s brain pressure and size has already started reducing. Amazingly, on the same day of Harriet’s surgery, Adiella received two COVID19 negative tests meaning she could finally meet Harriet, who was now two weeks old.
On the day of her surgery, Rob and Adiella found out that their health insurance did not cover any procedures or care that are the result of a congenital condition. Essentially; their insurance has declined coverage of Harriet’s care in NICU, scans, surgery and any future treatments she may require. This came as another major shock as it had never been indicated there would be any troubles with her health cover.
Rob and Adiella have a strong faith and trust God loves and has a plan for Harriet and themselves. Although Harriet’s life expectancy may not be very long, they feel so fortunate to be her parents and will treasure each day they get with her. She truly is a miracle baby and they can’t wait to take her on adventures for as long as they can.
They would like to thank the countless people around the world who have shown kindness, support and prayers towards them during this time. They are forever grateful.
This is my beautiful niece Harriet Elizabeth Stewart, who was born on the 10/09/20. As we can't be with her we are trying to create the support she needs from afar :)
The support shown on this page would help cover Harriet’s hospital stay in NICU, shunt surgery, associated hospital procedures and future immediate health costs for her care.
Anything additional will be donated to Melanoma New Zealand Foundation.
Harriet turns 2 Years old 26 September 2022
I thought I would give an update on our wee gal Harriet who amazingly turned 2 this month. What a ride it has been.
Since moving back to NZ she has been stable health wise other than seizures which she has daily.
They are not large seizures but more subtle movements that can be undetectable if you didn’t know her well. Some of them distress her and she is medicated quite heavily to help control them. The hard part is the medications dull her little personality. It’s a difficult trade off as we have to medicate to control them yet each time we increase or add a new medication she loses a little bit more of her sparkle.
She does however LOVE her food, especially bananas, cheese and avocados and her evening cuddle with Dad when he gets home from work. We feel so fortunate to have her with us and try to take each day as it comes. By the grace of God he has given us the strength and means to give her the best life that she can have.
We want to say thank you again for the prayers, kindness and help that has been given to her and us. We wouldn’t have been able to get through the last two years with out it.
In other news a younger brother arrived on the scene a few months ago. He has brought with him so much joy and cheekiness. We love him dearly.
From Rob, Adiella, Harriet + Walter
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