Tuesday, February 12, 2013

Information Booth: Mended Little Hearts of Dallas

Moving on in our journey around the Heartland Amusement Park we find ourselves lost, disoriented, and needing support.  That is when we stumble upon an information booth with info on two groups that can help us navigate this Heartland Amusement Park .  You see, they have been in this park before.  Maybe they haven't ridden all the rides, but they can help you connect to people who have.  These two groups are called Mended Little Hearts of Dallas and Sisters by Heart/Linked by Heart. 

 I am going to feature these two organizations over the next two days and explain how vital they are in supporting and encouraging families, spreading awareness and education, and providing tools and information to help these families through this unbelievable journey. Today's post will feature Mended  Little Hearts of Dallas.  I will explain what MLH of Dallas is all about and spotlight two of our Coordinator's Heart Heroes and one of our Coordinators who is a Heart Hero herself. 

According to our Mended Little Hearts of Dallas Website, 

“A Heartbeat...for many parents, hearing the heartbeat of their unborn child becomes their first, loving bond to that child. It's no wonder, then, that discovering that their child has a heart defect, whether diagnosed in the womb, shortly after birth or during childhood, can be devastating.
Mended Little Hearts, a support program for parents of children with heart defects and heart disease, is dedicated to inspiring hope in those who care for the littlest heart patients of all. Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope.”

Our Dallas chapter is just over a year old.  We hold monthly meetings at Children's Medical Center in Dallas where we bring in "non-hospital" food, have door prizes, craft projects, guest speakers, and a lot of time to offer each other support and encouragement.  We have just started our Care Bag program.  Our goal is to hand out Care Bags filled with comfort and personal care items to the families in the CVICU and 8th floor during the first visit to Children's Medical Center in Dallas.  There are a couple of us who have completed the necessary training to be official volunteers at CMC, so we go a couple of times a month to CMC's heart floors to visit families in the hospital.  We also have fun family activities as well as helping out with other CHD awareness activities. 

This group has been a great encouragement for me.  It is nice to have other Heart Parents to talk to about the day to day journey of living with a child with a CHD.

If you are interested in helping out our small but mighty group please contact me.  We can always use Care Bag items.  But more importantly if you know of anyone in the DFW area that need a CHD support group please send them our way.   

Meet Some of Our MLH of Dallas Heart Heroes: 

 Jackson Whitehead:
After an uneventful pregnancy filled with sonograms showing my healthy baby, Jackson Thomas Whitehead was born on January 5, 2011. I had a planned csection and by the time we went from the OR to our room the nurses new something was wrong. Jackson was making a hiccup like noise which alerts the nurses that he is having trouble breathing. They took him to the NICU where they were focusing on his lungs. They thought they might be underdeveloped even though I had him during my 39th week. A cardiologist was brought in and an echocardiogram was performed on Jackson. That's when they found his heart defect. It's called Total Anomalous Pulmonary Venus Return (TAPVR) and it's when none of the four veins that take blood from the lungs to the heart is attached to the left atrium. This is extremely hard to detect before the baby is born since babies do not use their lungs until after they are born. We had Jackson at 1pm, they figured out that he had a CHD later that night, he was transferred to Medical City Children's Hospital and had his heart surgery the following morning.  It was a whirl wind of heart break and a fear I have never experienced before. I was only able to hold him for about 20 minutes before he was taken away from me. I was also stuck at the hospital I gave birth at while he and my husband were at Medical City. When I was finally able to leave my hospital I spent day in and day out next to my little boys side. He was my first born and before this I never even heard of congenital heart defects. The surgery was a success and after 19 days we were able to take him home with just one heart med and some meds to help with his withdrawal from the pain medication used while he was in the hospital. He currently has a minor heart murmur and will have to see a cardiologist once a year for many more years to come. The one thing that has to be watched is that no scar tissues builds up in the heart at the surgery site. If that happens he will have to have heart surgery again. Statistics show that if a child makes it through the surgery successfully he will only have a 5% chance of this happening. Besides the murmur he is a happy and thriving 2 year old boy who is so smart and very caring. He is my little survivor! 

 Erin Winsett:

I was born in 1980 with tetralogy of Fallot. In the fall of 1982, I had my corrective surgery. I also had the mitral valve widened in 1992 by a valvuloplasty. I was told by my mother from a young age to not let my condition stop me from having a normal life. She insisted I see a cardiologist yearly and I still do! I have been very blessed health-wise and will be able to have children which is perfect because I am a newlywed!

 Mason Studer:

Our son Mason was born on December 23rd, 2010. He was born with multiple congenital heart defects: aortic arch hypoplasty, aortic coarctation, an atrial septal defect and a ventricular septal defect. Fortunately, a very qualified sonography technician detected the defect at 20 weeks of gestation. Due to this, the doctors were able to formulate a plan that gave Mason the best chance for survival. He had open-heart surgery on January 3rd, 2011 at Children's Medical Center. Only six days post-op Mason came home and is now a thriving 2 year old!

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