Congenital Heart Defect Awareness - Day 5

Today we have another guest post from a heart mom, Christina, whom I met after we both found out we were having a baby with HLHS.  Christina has been there all along the way and her son, Wyatt, has faced many of the same struggles as Audra has.  Her post shows how supportive others can be, even if we have never physically met - it is what many refer to as the Heartland.  I am not happy that our children and families have had the struggles that we have, but I am thankful that Christina and her family are in our lives.  We look forward to getting our families together someday soon - perhaps this summer when RSV season is over :)  Love you and your family too, Christina!!  Here is her post:

Hope and What I Have Learned Along the Way

One thing that I have learned over the 15 months is the meaning of a Congenital Heart Defect.  I had no idea how common it occurs and the devastating effects it can have on a child’s life.  February 7-14th is CHD Awareness Week.  To be perfectly honest one year ago I was probably as unaware of what that meant as you may be.  15 months ago I got the most devastating news of my life; the baby I felt moving around in my belly had a heart defect and a very serious one Hypoplastic Left Heart Syndrome.  Sitting in the doctor’s office he described how absolutely devastating a condition this is for my child, (at least I think he did). I remember him saying that only half of his heart had developed and then I think I tuned in and out of what he was saying.  I remember my first question was what can I do?  His response was that there were three options: compassionate care, meaning after he was born do not medically intervene and say goodbye, we could abort, or we could try for the three staged surgeries.  I am not sure that that is the question I meant but it was not what I wanted a doctor to tell me.  All I knew is that my son deserved every chance we could give him.  Therefore, I went searching for some hope.

The first glimpse of hope was with the cardiologist and discussion of the amazing place just a little over an hour away from our home-Mott Children’s Hospital.  Ranked #3 at the time for its work on amazing little “victors”.

The second glimpse of hope came with the meeting of two little warriors Bowen (HLHS) and Nora (HRHS).  They had both undergone 2 of their 3 surgeries and were doing great!  They gave me a vision of what to hope for :)

My third glimpse of hope was Sister by Heart and Aly.  Sisters by Heart is an amazing group that supports newly diagnosed families of HLHS.  Aly is the daughter of Jenny Lincoln one of the founders of SBH, Aly has been through all three surgeries and is doing great!  Aly also went to Mott Children’s as well.

Finally, my other hope and friend is Lora and her daughter, Audra.  Jenny from SBH connected me with Lora whom was due just a couple weeks ahead of me and was set to have Audra at Mott as well.  Lora and I began emailing exactly one year ago this week, as crazy as that is.  Lora and I have made a connection as only heart moms could, and only someone who was carrying that same uncertainty while carrying her baby could understand.  I was lucky enough to be pregnant with my first child Marshall with my best friend Melissa.  We grew so close and I loved sharing that experience with her! I WONDERED HOW WAS I GOING TO DO IT THIS TIME? Thankfully I had Lora and eventually just 3 weeks before Wyatt was born, Audra to inspire and give me hope!  Audra rocked the Norwood and had gave me so much hope as I went to have Wyatt.  Wyatt and Audra have had many of the same bumps in their path and Lora has helped me so much along the way!  I Love You, Lora!  Thank you for being my constant connection and sounding board as moms who travel a different path along the way.