Finding Joy After Losing a Twin to TTTS :: Kathryn Day 2014

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To What Lengths Would You Go to Save Your Dying Child?

We have all watched with hope and admiration as Eliza’s parents launched the #SavingEliza campaign, raising almost two million dollars (!!!) for a cure for her rare disease – Sanfillipo Syndrome. I just saw an update that the money has been put to use and the drug to stop the disease is being created!

That is truly amazing; the result of Eliza’s parents’ unwillingness to stop until they saved her life. Or at least never stopped trying.

But not all parents have the opportunity to do something to save their child while their child is still alive.

In some cases, the best you can do is try to help others from having to live the same experiences. And even if you can never physically save someone, you do your darndest to improve someone’s day.

That’s what I try to do. That’s what “Kathryn Day” (and really every day) is for me.

ED quote

Kathryn’s Story (or parts of it!)

My husband I watched with great excitement as Sylvia, our beloved ultrasound technician, began the 20 week anatomy scan. I had finally gotten used to the idea that there were TWO babies in there. TWO. With a four year old and an 18 month old at home, I was terrified about what was to come, but also very excited.

Identical twin girls.

Oh the fun we would have. Matching clothes, matching crib sets, matching everything.

But a few minutes later, we would learn that those dreams would never come to fruition.

I’d had enough ultrasounds with Sylvia to know her style. And quiet was not normal.

“Do you see this black stuff around Baby A’s tummy?”

As soon as she said it, my heart sank, and the tears welled up in my eyes. My husband laughed at me. “Don’t go jumping to conclusions!”

But I knew. I knew by Sylvia’s expression. I knew by “black stuff” that something was not right.

Mother’s intuition is shockingly accurate.

“Your babies have what is called Twin to Twin Transfusion Syndrome,” Sylvia explained. “I’m going to get the doctor, and she’ll tell you more.”

In the next few hours and days, we learned a lot about this syndrome. And most of it was not good.

What is TTTS?

  •  TTTS affects identical twins who are sharing a placenta

Fun fact – did you know that ANY woman who can conceive can become pregnant with identical twins? I always thought they were hereditary, but that’s fraternal twins. The medical field still does not know what causes an egg to split, but that is what results in identical twins; one egg splits into two (or more!) identical fetuses. And that, my friends, can happen to anyone.

  • Because the babies share a placenta, the blood supplies can become connected resulting in shared blood circulation
  • This connection allows blood to pass from one twin to another, and with TTTS, the blood is not transferred proportionately
  • The “donor” twin winds up transferring blood to the “recipient” twin, reducing the blood flow to the donor, slowing their growth and reducing their amniotic fluid levels
  • The “recipient” receives too much blood flow, which can cause polyhdramnios – or too much fluid, which can lead to heart failure and hydrops, along with other complications
  • When TTTS develops prior to 26 weeks, it often results in death of one or both babies, or severe disabilities
  • TTTS results in many severely preterm births, complications, disabilities, and death

TTTS is a beast. More babies die each year from TTTS than SIDS. Yes, that’s a true statistic. And yet, many OBs continue to remain in ignorance about the dangers, signs, symptoms, and treatments.

Kathryn and Charis

That “black stuff” we were told about was an indication that Baby A’s (who we would name Kathryn) heart was already beginning to fail. It was fluid building up around her belly, indicating that her heart was not able to pump all the fluid through. This is called hydrops fetalis.

I could bore you to tears with medical terminology, but the bottom line is this: within one hour, we went from being ecstatic about having identical twin girls to being told that both babies would die.

For the first time, I understood the anguish of losing a pregnancy; a baby. Two, in fact.

I was transferred to the care of a Maternal Fetal Medicine (MFM) specialist and our TTTS journey began. I have shared the details of that journey on the Columbia SC Moms Blog and my own, if you’re interested in the details.

After ten weeks of hospitalizations and procedures, the babies were born on December 10, 2011.

We said goodbye to our sweet Kathryn three years ago today, December 12th, at 8:52 pm. She lived almost 51 hours.

December 12th – Kathryn Day

Kathryn Day 2014

I officially declared December 12th “Kathryn Day” last year. I made the decision to make Kathryn’s 51 hours COUNT instead of just being sad around the anniversary of her death.

Kathryn Day, for me, is about bringing continued awareness to TTTS, raising money for key organizations, and helping someone in need. It was inspired by my friend Sheila, who lost her four year old daughter to pediatric cancer. Since her daughter Donna died several years ago, she has raised thousands upon thousands of dollars in her daughter’s name for pediatric cancer research and to help families going through this. She created “Donna Day” as an annual goal date to focus these fundraising efforts.

Moms do stuff like this because if we are nothing else, we sure are passionate about our children. We raise money for cures or for research. We help others going through a similar experience. We make dinner for a mom who has just had a baby; we cry with a mom who has just lost one.

We pay it forward in the hopes that we’ll never need it back.

I encourage everyone to do something kind for someone today. Or give back to your community somehow.

Or… just throwing this out there, you could make a donation to an organization that could use your help in helping others.

One of the ways I try to have an impact and make a difference is through raising money for our March for Babies team – Charis and Kat. We hope to influence research and funding for TTTS at the national level through our fundraising and advocacy with the March of Dimes. Additionally, I am forever indebted to the amazing advancements in neonatal care that saved our sweet Charis. Neonatal care, NICUs, lung surfactant treatment, steroid treatment, newborn screening, and so many other advancements for prenatal care have come to fruition because of research and funding from the March of Dimes.

I will never be able to save my own child, but if I can help even ONE family save their baby(ies), all my efforts are worth it. Will you help?

December is TTTS Awareness Month. If you know someone pregnant with identical twins, please encourage them to reach out to the TTTS Foundation as quickly as they can. There is actually a LOT that can be done, but they have to KNOW the information and be proactive.

Have you experienced loss through TTTS? Share your journey in comments below.

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Alexa Bigwarfe
Alexa Bigwarfe is a mother to 3 wildlings who keep her on her toes. She is an advocate, activist, speaker, author & author coach, publisher, and podcaster. Her writing career began after her infant daughter passed away at 2 days old and she turned to writing for healing. Since then, she has used her writing platform for advocacy and activism to support mothers, children, and marginalized voices. She began a nonprofit, Sunshine After the Storm, to provide support, care, healing retreats, and grief recovery to mothers in their most difficult time. She is the creator and co-host of the Lose the Cape podcast, which features moms working to make a difference in their children's lives and has co-authored and published four volumes under the Lose the Cape brand. Her primary business is Write|Publish|Sell, a company dedicated to shepherding authors through the massive process of writing and publishing their books like a pro. She owns her own publishing house, Kat Biggie Press, and a children's book publishing company, Purple Butterfly Press - both dedicated to bringing stories of hope, inspiration, encouragement, and girl-power to the world. Learn more at alexabigwarfe.com.

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