Give Hope to Sara's Baby Battling HLHS

Hello. My name is Sara and I and asking for help to save my baby.

On August 21st, our lives changed forever when my first little one was diagnosed with Hypoplastic Left ventricular Heart Syndrome (HLHS). With this diagnosis, our baby's left ventricle of the heart is underdeveloped. This is the side of the heart that pumps blood to rest of the body. In general, our baby has one working ventricle. Seeing as there are no heart issues within our family, we were devastated.

The doctors told us that we had 3 options:

1) To terminate the pregnancy (with me being 24 weeks we couldn't do that.... It's not the baby's fault they have a special heart).

2) To have the baby and pursue palliative/comfort care and letting the baby die naturally (from a few hours to a few days of life)

3) To have the baby and pursue a path of 3 very risky heart surgeries (the first being done within the first day or two of life) to help get more blood throughout the body. The heart will never be ok 100% since there is no left ventricle, but they can help to create pathways to make the heart function as close to a normal heart as possible. There might also be the need for a heart transplant in the future once the baby gets bigger.

I have been to many specialists (both in Phoenix and Cleveland) and working to put together the best team we can to give our child the best chance at survival. We are doing what we can to save our little one not for us but for the child themselves to give them a chance at life. Currently we are preparing options 2 and 3 in both places depending on finances and how this will affect the family dynamic. Also planning has taken every extra moment I have to gather information and make plans for baby's arrival... And I am told the planning piece is the easy part!

For me, I know that this is a trial God is putting me and our family through and hope that His plan is to use our baby's story to inspire others faced with this path or have special medical needs children to not give up. With all of the preparation and coordination, we are hoping for the best outcome possible and will be providing updates as our story progresses.

How can you help?

1) Awareness: Please share our story. We know that we are not the only ones out there faced with this sort of situation and hope that through our story it can inspire or connect us with others (maybe even other HLHS families).

2) Love and Support: This baby is stubborn and doesn't like pictures taken or bothered while growing. But for us we know it's been hard especially for me each day feeling the baby and not knowing what is going to happen. Sometimes a nice comment, message or card helps me to get through the day and stay positive in the face of great trial.

3) Financial: If you are able to give, we appreciate any and all help. Since we don't know what the baby special needs are or hospital requirements, we were not able to celebrate like other parents do with big gender reveals or baby showers. In lieu of gifts, donations would help to cover the medical bills (for the major surgeries or for even the birth itself). I will also not be able to work for a time after having our little one to recover and help the baby through recovery of the first surgery and getting them strong enough and big enough for the next one which occurs within 4-6 months of life. This will help to keep life's other needs/bills provided for.

4) Live support on site: Once we have picked a hospital (Cleveland or Phoenix), I will be in that location for a few months. Sometimes seeing a friendly face for coffee or grabbing dinner away from the hospital will help. Please reach out because there might be other ways to help (even something small like a grocery store run :) )

Thank you for any help you can give our family.

Signed, The Mraz/Erwin Family