Philanthropy Friday: For Love of Kathryn

Each Friday, the another jennifer blog shares stories of those who incorporate philanthropy into their everyday lives – personally and professionally – in a creative and unique way. If you have a story you’d like to share, please contact Jennifer.

This following article is a guest post from Alexa.

In December 2011, I delivered identical twin girls at 30 weeks gestation. My “Tiny” weighed only 1 lb 10 oz. My “Teeny,” Kathryn, was 4lb 5.9 oz, had too many issues and, sadly, died in my arms after two days.

Kathryn and “Tiny” in the NICU

Now my life is dedicated to fighting for the tiniest of the tiny – the preemies – and bringing awareness to the syndrome that nearly took both of my girls.

The babies suffered from a disease of the placenta that affects identical twins (who share a placenta) called Twin to Twin Transfusion Syndrome (TTTS). In a nutshell, they do not share the placenta equally and one baby receives too much fluid, while the other does not get enough. TTTS often causes heart failure and most TTTS babies are born premature, along with many other complications.

Sadly, it is still a disease that is not well known even though two times as many babies die each year from TTTS than from SIDS. Even more sadly, many OBs are in the dark about it. Or if they know about it, they have incorrect information.

My Kathryn’s two days on earth and her loss impacted me tremendously. As soon as I knew “Tiny” was out of the woods, I began to seek out opportunities to DO SOMETHING. I could not let my daughter’s life be in vain.

This is the only picture I have of my girls together.

As we were getting closer to our departure date from the NICU, we were asked if we would be willing to be interviewed for the Children’s Miracle Network Radiothon fundraiser that the Children’s Hospital was conducting. I eagerly accepted, knowing this would be a great opportunity to spread awareness about TTTS. So, Tiny was released from the hospital on Saturday, and the following Monday we returned to do a live radio interview.

It felt great to talk about my daughters, to tell other people about it, and to publicly thank the hospital and the wonderful staff who had cared for me and my girls for a total of 16 weeks. During the month of February, I saw the purple posters for the March of Dimes (MOD) March for Babies. I had heard of MOD, of course, but it was not until we had an 84 day stay in the NICU and I saw firsthand what is being done in neonatal care, largely in thanks to efforts and advocacy by the March of Dimes, that I began to really have an understanding of the organization.

I made the decision to start a family team for the March for Babies.

I never imagined the support we would get in response. We had a 20 person team and raised over $6,000!  Not bad for a team that formed just over a month before the event! Our team also won Top Individual Fundraiser and Top Family Team Fundraiser.

I have also met other mothers locally who went through TTTS and formed a TTTS Support Group. With the help of the TTTS Foundation, we plan on visiting OB/GYN practices in our area and providing resource manuals and our contact information so that we can be a resource to help mothers before, during, or after they go through this.

Our little group is avidly reaching out to the media in as many ways as we can. We are also “Miracle Families” for our local Children’s Hospital, and we have the opportunity to speak at fundraising events. I have also begun volunteering with the March of Dimes advocacy office.

In June 2012 I began my blog “No Holding Back.” Through this blog I grieve, I mourn, I share my story, I allow others to share their story, I advocate, I spread awareness. I have a dedicated segment called “TTTS Tuesday” in which I share stories of those who have gone through this.

Medical experts don’t know what makes the egg split. I always believed (incorrectly) that twins were either genetic or came from fertilization treatments, but any woman can have her egg split. And, at some point in your life, it is highly likely you will come across someone pregnant with identical twins.

Alexa is a stay at home mother of four – three on earth and one in heaven. She blogs about life after loss, finding joy again, and raising three small children. Raising awareness about TTTS, advocating and volunteering with organizations such as the March of Dimes and Teeny Tears help her honor her daughter Kathryn.

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  1. says

    You are an incredibly brave woman. I think that you’ve chose help others by educating them about this disease is a tribute to all of your children here on earth and in heaven. Blessings to you and your family.

    Great guest Jennifer, I have a special place in my heart for other grieving moms.
    jen recently killed the catMy Profile


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