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If only she could be here…

April 18, 2016 by katbiggie Leave a Comment

March and April are always pretty difficult months for me. It’s March for Babies time, and I am dedicated and committed to raising as much money as I can each year.

But with this responsibility (and let it be known, this is my passion, but I also consider it a responsibility, which I’ll explain) comes the annual re-hashing of our story. Looking at pictures, reliving the worst days an months of my life, and putting myself back in that moment of time.

Our baby girls were born almost 10 weeks early. Identical twin girls, they were afflicted by a disease of the placenta that affects identical twins. Twin-to-Twin Transfusion Syndrome (TTTS). Thankfully, because of advances in neonatal care (which has come about because of the March of Dimes,) the ever-evolving technology in the Neonatal Intensive Care Unit (the NICU) MOST babies who are born as early as 24 weeks are able to survive.

MOST of them. Those that are born otherwise healthy, just too soon. But their road is not easy. The risk of brain bleeds, infection, NEC (infection in the bowels), heart, site, and hearing issues, asthma and lung issues, long term mental health disabilities such as cerebral palsy, autism, and other issues are SO much higher in a baby that is born too soon.

March for Babies

More work needs to be done. Research. Training. Better equipment.

All of that takes money.

Kathryn was pretty much doomed from the time we learned of their condition at the 20 week anatomy scan. We were lucky that she stayed alive long enough for her to be born alive and to spend 2 days with us. But her heart and lungs had been so badly damaged by the excess fluid building up (hydrops) caused by the TTTS. That’s a very basic medical explanation, but I DO believe that there will come a time when a baby, even in her state of damage from hydrops, will be able to be fixed. The best option would probably be more care in utero, but I’ll let the experts decide.

They must have funding to do the research.

March for babies is the biggest fundraiser the March of Dimes does each year. This is our 5th year participating. I’d love to make a loud noise. For my girls.

DONATE TO TEAM CHARIS AND KAT HERE.

So why do I consider this a responsibility? Because there are many, many causes out there that are important and need funding. And all of them need passionate advocates with a story of WHY it’s so important for you to support this cause. And I have a story and the passion. I have one living reminder every day, and one giant sized hole in my heart that will never heal. But in her memory, I can ensure other mothers may be saved from this pain.

If only she could be here… but she is not. So in her absence, I give of myself.

World Prematurity Awareness Day

Finally, it’s not just preemies that benefit from March of Dimes research and funding. EVERY baby born in the United States now gets newborn screening – that catches ALL KINDS of things that are otherwise missed and can lead to death. It pays for programs to support healthy pregnancies. It pays for NICU equipment, training of nurses and doctors, immunization research, and so much more.

The March of Dimes is responsible for the eradication of Polio in our country and ALMOST world wide. Now that’s something!rp_350px-Polio_vaccine_poster.jpg

So, in a nutshell. If you’ve ever been a baby, had a baby, loved a baby – you’ve been impacted by the March of Dimes.

Please consider even a small donation to help us meet our goal!

DONATE TO TEAM CHARIS AND KAT HERE.

 

Filed Under: Blogging Tagged With: Advocacy, babyloss, Grief, Kathryn, March for Babies, March of Dimes, NICU, TTTS Angels, TTTS Survivors, Twin to Twin Transfusion Syndrome

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