Mark Skubak is fundraising
Fundraising in memory of Alexandra Lauryn
I’ve gone back and forth so many times on if I should post this and decided ultimately to share my experience in hopes it can help anyone that has or will go through a similar life event. Trigger warning if anyone has experienced the loss of a child. I’m sorry.
Yesterday sucked. Every year November 9th brings back a rush of pain, tears, and hurt at the reminder that my little girl’s heart stopped beating 45 minutes after being born 7 years ago. We should have been celebrating her birthday instead of mourning. Lucas my baby boy should have been perfecting his role as the annoying but loving little brother. I should have been looking forward to a daddy daughter dance with my girl. But I wasn’t for reasons I still don’t understand.
In November 2015 there were no signs of any concerns with the pregnancy. All appointments and ultra sounds were great. Ally was measuring perfect. Then Ally’s mom Samantha had some spotting, and noticed her legs were a little swollen, which we thought was likely because of her work schedule requiring her be on her feet all day. We called her ob gyn and was told to go to the ER just to be sure. We packed up and went not knowing our dreams were about to be shattered.
After numerous tests throughout the day, we were told our baby girl had severe Edema/swelling and Samantha was experiencing mirror syndrome, which in itself was putting Sams life at risk due to hypertension and potential for seizures. The diagnosis required immediate transportation to Lutheran Generals neonatal intensive care unit.
Ultimately, we were told Ally had a condition called hydrops fetalis, which shockingly occurs in 1 out of 1,000 births and yet causes are still very unknown. Only about 20 percent of babies diagnosed with hydrops fetalis before birth will survive to delivery, and of those babies, only half will survive after delivery. Our Ally was one of the many babies that did not survive.
Genetic testing on Ally, myself, and Samantha all returned normal. All tests for that matter returned normal. We were told that unfortunately in many cases an underlying cause is never determined as so much is still unknown about hydrops fetalis.
It’s taken me all this time to determine how to honor my little girl and shine as much of a positive light on my experience as possible. It has always hurt me knowing that other expectant parents will go through the same thing and come away not knowing why. What condition caused it? What’s wrong with me or us that this happened?
From today until next year November 9th, 2023 to celebrate to Alexandra Lauryn - I plan to conduct a variety of fundraisers to help contribute towards hydrops fetalis research with the hope that this effort can help to spread awareness, help to identify the why and save someone’s baby in the future through enhanced testing and/or in-vitro surgeries.
If you are able and can contribute, I’ve started a gofund me in Ally’s honor. Any contribution is truly appreciated.
Want to join me in making a difference? I'm raising money to benefit Brianna Marie Foundation, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me.
More information about Brianna Marie Foundation: The Brianna Marie Foundation's mission is to provide hope to unborn babies and their families by advancing the field of fetal medicine (or surgeries performed on babies prior to birth) when a negative fetal diagnosis has been given. We worked with medical institutions around the world on different studies, surgical techniques, etc. Thank you for helping us, help others.
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