Fund Resource Toolkits for Level III and IV Maryland NICUs

Nichole Cubbage is organizing this fundraiser to benefit The Skye High USA Foundation Limited.

Tax deductible

Hello There,

My name is Dr. Nichole Cubbage. 4 years ago, my partner and I decided to have a second child. At the very first OBGYN appointment, there were 2 sacs, 2 embryos, and 2 hearts- only one of which was beating.

Although I had my first child with this same practice (consisting of both OBGYNs and midwives) where I had a wonderful experience, my second pregnancy would soon become a slow, tortuous nightmare I wouldn't wish on my worst enemy. Throughout my experiences, I discovered many others around the globe who also saw a need for improved care surrounding miscarriage and infant death. As rates of twinning, miscarriage, and the need for enhanced care continue to rise due to a number of factors (e.g., increasing maternal age, increasing rates of infertility, incrasing environmental pollutants that impact fetal development, etc.), I made it a part of my life's mission to improve care for patients and providers who experience fetal and infant death during pregnancy and postpartum, including of multiples (i.e., twins, triplets, and higher-order multiples). I'll write more on the details of the story at the end...

For now, here's why I'm asking for donations:

Throughout the pursuit of my Doctor of Health Science (DHSc) degree, I conducted a global IRB-approved study on the experiences of patients with VTS and discerned a need to enhance the implementation and evaluation of existing efforts surrounding the loss of multiples. To continue supporting relevant efforts, one of the many wonderful organizations I spend a portion of my time volunteering with includes the Skye High Foundation, which was recently awarded its 501(c)(3) status in late 2024.

The aim of Skye High, partnered with the Butterfly Project, is to improve the lives and experiences of those who endure a loss of multiples. With the expansion of the foundation from the UK into the US, volunteers across America are helping fundraise for individual hospitals to recieve a bereavement "toolkit" containing materials and resources for patients, staff training resources, and provider guidelines. Toolkits inlcude but are not limited to:

• links to staff training courses, PowerPoints, brochures, and guidelines

• a butterfly card for incubators where the name of the lost twin can be written for staff to see and acknowledge

• purple crocheted butterfly

• patient brochure with information and resources

To start, I am seeking donations to commence disbursing the toolkit to all level III and IV NICUs in the state of of Maryland (15 level III and IV NICUs total). A list of these NICUs may be found at the Perinatal and Neonatal Referral Centers, here: https://search.app/p96Dtcckt4srUJmk9. The materials for each hospital will cost about $150.

The estimates for these costs were based on previous costs associated with implementation of the materials in neonatal units across the UK.

$150 X 15 hospitals = a goal of $2,250.

This Go Fund Me is linked directly to the Skye High Foundation, and all proceeds will be delegated through them.

More on the story that inspired larger pursuits:

My providers had very little information on the type of miscarriage of multiples I was experiencing (i.e., vanishing twin syndrome, VTS). Vanishing twin syndrome results in 3 general outcomes: 1) blighted ovum, 2) calcified fetus, 3) full or partial resorption into the the mother and/or surviving fetus(es) (Zamani & Parekh, 2021).

At first, I was informed removing the fetal remains of the deceased twin was not possible or medically necessary as they would "vanish" (i.e., resorb into me and/or the surviving fetus) by the end of the first trimester.

The remains stayed.

Then, I was told the remains would "vanish" by the end of the 2nd trimester. During the first trimester, I had one appointment where I was informed the remains of twin had finally vanished, only to rediscover the remains at a subsequent appointment. This scenario repeated itself in the second trimester.

My doctors employed what little information they had that was available on VTS (69 sources in PubMed) at the time, and I was again told the remains should "vanish" by birth. Numerous questions surrounding the handling of the remains were asked about what would happen if they were present at birth, of which I had to call the berevement coordinators of hospitals to have many answered.

The remains of the deceased twin on ultrasound at 26 weeks gestation and they were fused to the surviving twin's placenta at the time of birth. My final appointment was at 30 weeks gestation, but my providers did not deem medical imaging necessary despite the ambiguity of the status of the fetal remains.

I wrote an article on this story, which I also discussed in a podcast with Medpage Today's KevinMD in 2021.

Reference:

Zamani, Z., & Parekh, U. (2021). Vanishing Twin Syndrome. StatPearls Publishing. http://www.ncbi.nlm.nih.gov/books/NBK563220/