The Skye High USA Foundation Limited

Hi! I'm Noelle Wysocki, mom to Adrienne (7), Liliana (4), and Josephine (forever 14 days old). I'm raising funds on behalf of The Skye High Foundation so that every family in the US who experiences the death of a multiple in, or shortly after, birth has resources to help them communicate their loss to their medical team during the NICU stay of the survivor(s). I know that's a mouthful. Let me tell you about why this is important to me.

My identical (monochorionic diamniotic) twin girls were born at just 27 weeks due to complications with Twin-to-Twin Transfusion Syndrome (TTTS) and Twin Anemia Polycythemia Sequence (TAPS). Josephine suffered catastrophic brain damage and died at 14 days old on November 30, 2020. Liliana lived in the NICU for a total of 99 days before she was strong enough to come home.

Since birth, Liliana's medical chart has read "Twin Birth," letting her care providers know that she did not come into the world alone. When Josephine died, another note was added to her chart, further down, "Twin deceased." To get to this second note, care providers would have to scroll down a bit, something that didn't always happen when new nurses, doctors, or lactation consultants came into the room. I couldn't tell you how many times I was on the receiving end of well-intentioned "I see you had twins! How exciting! Congratulations!" I would then explain that Josephine had died while tears streamed down my face. I wished they had read just a little farther in the chart to have a better understanding of what we were going through so they could tailor their conversation. I wished for some kind of symbol to make it easier for them to know this critical detail.

Not long after Liliana came home, I found The Skye High Foundation while scrolling Loss Mom content on Instagram. It was then that I learned about Millie, mom to Callie and Skye, and the purple butterfly symbol she launched. Millie, too, yearned for a symbol to tell care providers about the death of one of her twins, Skye, while her survivor, Callie, grew stronger in the NICU in the UK. She created a purple butterfly sticker and attached it to Callie's cot, a silent communication that Callie's twin had died. With that, The Skye High Foundation was born.

Thanks to The Skye High Foundation, the purple butterfly and other support resources and memorial items are now available to families who have experienced the death of a multiple at every single hospital in the UK! The Skye High Foundation is making a difference for families who carry this unique sense of grief by helping them communicate to their providers that one of their children has died. Skye's purple butterfly is now coming to the US and I want to help get it, and the other Skye High Foundation resources, to as many hospitals as possible.

I am a Skye High USA Ambassador in honor of Josephine. Had I had the purple butterfly while Liliana was in the NICU, and staff had received the excellent training about its meaning, Jake and I could have been spared additional heartache at having to correct our care providers over and over again letting them know that Josephine had died.

Your contribution to this fund will help provide the purple butterfly, staff training resources, and other support materials to hospitals across the US. Just $150 allows The Skye High Foundation to provide support to one hospital for a whole year.

Thank you for considering donating to The Skye High Foundation and helping families who have experienced the death of one of their multiples feel supported throughout their NICU stay.

I found out I was pregnant with identical twins in 2022 and unfortunately, I lost one of my twins halfway through my pregnancy to TTTS (twin-to-twin transfusion syndrome). I now have a beautiful, healthy 17-month-old survivor and I am extremely grateful for him; however, that doesn't take away from the grief of losing my son, his identical brother.

Never did I anticipate to hold a healthy baby in one arm and a stillborn baby in the other. While figuring out how to love and grieve during my post-partum period, I experienced a range of emotions. I began following a few support groups of women who have also lost another twin baby, one of them being the Skye High Foundation based in the UK. This foundation provides support and advocates for improved bereavement resources for those who have experienced the loss of a multiple. Some resources include stickers that can be placed on hospital notes, posters to be placed in the NICU and the purple butterfly cot cards. The cot cards allow the family to write the name of their lost baby in remembrance. The purple butterfly has become a symbol that represents the loss of a multiple. The purpose of these resources are to raise awareness and avoid unnecessary comments and questions for those families who have experienced the loss of a baby, especially when they are vulnerable and emotions are particularly high.

The foundation has been able to provide every NICU in the UK with these resources. The next goal is the USA. My role as an ambassador for the Skye High Foundation is to help achieve this goal. There are over 1400 NICU’s in the US and the minimum needed to provide these resources to each hospital costs $150.

I will be partnering with two hospitals that played an integral part of my pregnancy, South Shore and Boston Children’s Hospital. My minimum goal is $150 for each hospital but if I am able to raise up to $1000, that will provide me with the ability to add additional items to the keepsake memory pack for each family to take home and remember their baby.

Any donation is greatly appreciated, the more I am able to raise the more hospitals I can help out <3

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/ 

(The purple butterfly is the international symbol for twin loss.)

(A sunrise baby is the surviving twin. A sunset baby is the lost twin.)

(By UK artist Rose Orion Art)

Hi! My name is Sarah, and early last year, my husband and I embarked on expanding our family through IVF after having our son via IVF two years prior. Very early on, we learned our embryo split, and we were expecting twin girls. Unfortunately, after a twin-to-twin transfusion diagnosis, fetal surgery, and constant monitoring, we lost one of our babies to heart failure. It was a devastating loss, and despite the TTTS diagnosis, we still weren't prepared for it. A few weeks later, I gave birth, and our survivor spent 100 days in the NICU. Losing a twin, triplet, or multiples is incredibly tragic, especially while your survivor is fighting for their life in the hospital.

The Skye High Foundation has been a UK-based charity that supports bereaved families who have lost a multiple that I leaned on after our loss, as there were many US programs available. Recently, they've made their way to the US and have begun to grow roots here. As US Ambassador and in honor of our daughter who passed, Iris, I would love if you could help us raise funds to support and provide resources to our amazing hospital and NICU. These funds will provide bereaved families with boxes with resources, keepsakes, and even staff training pamphlets for the hospital.

Anything helps, and I know from personal experience, these resources are comforting.

The Skye High Foundation is a nonprofit organization to support families during and after the loss of a twin, triplet, or multiple. I have joined the foundation as an ambassador for the Nashville area to help provide care packages and grief support to families who experienced the same heartbreaking loss we did. The care packages include a purple butterfly card to be placed in the incubator or crib in memory of their sibling. Please help me raise funds for the development of the packages so I can distribute them to various hospitals in the area. Remember this is a non profit organization so ALL proceeds go to the foundation. Thank you so much!

Help Us Send Comfort to Families Who Have Sadly Lost a Twin, Triplet, or Multiples

At Skye High USA Foundation, we are dedicated to providing support and comfort to families who have faced the heart breaking loss of a twin, triplet, or multiples. We want to offer a small gesture of love and remembrance during such a painful time and allow other families an opportunity to give back to others.

We’ve created memory packs that include a butterfly card, a small crocheted butterfly, and a heartfelt message from the family that donated, all meant to bring a little comfort to families who are navigating unimaginable loss. The packs may seem simple but can bring such hope and love to a family during such a tragic time.

Here’s how you can help:

For every $20 raised, we will send out a 4 memory packs to a 4 separate families. Your donation, no matter the amount, will make a meaningful difference to their journey. Each pack sent will include a note acknowledging your generous donation, letting families know they are supported by people like you.

Together, we can make sure these families feel the love and care they deserve during such a difficult time.

Thank you for being part of this journey with us. Your support means everything.

We are so grateful for any donation, regardless of the amount. Even $5 helps us cover the cost of the printing of items,

The Skye High USA Foundation Team