Haven, born 2010

On October 23, 2009, at 20 weeks into our first pregnancy, my husband and I found out that our baby had a CHD called Pulmonary Atresia with Intact Ventricular Septum. We were sent to the Advanced Fetal Care Center at Children's Hospital Boston and the remainder of our pregnancy was filled with trying to stay positive, gearing up for whatever lay ahead, and hoping beyond hope that our baby would survive the surgeries it faced once it was born. During our care at the AFCC, we were considered for a fetal intervention surgery but ultimately it was decided that our baby's pulmonary valve was just too small to try and attempt the surgery given the risks to both me and the baby.

 

On March 4th, 2010, with a special team of doctors and surgeons awaiting the arrival of our baby, through natural childbirth, I delivered my daughter Haven. She was immediately taken from me and my husband traveled with her to Children's Hospital where they would stabilize her, perform an echo, and decide which surgery options were viable.

 

On March 8th, Haven had her BT shunt surgery. While the surgery was technically a success, Haven had "some trouble" stabilizing and ended up on ECMO. To this day, my husband and I thank our lucky stars that we were fortunate enough to be at Children's Boston where ECMO is available 24/7. Having the option to put Haven immediately on ECMO undoubtedly saved her life at a very critical moment when we easily could have lost her had ECMO not been available to our daughter.

 

The next week was very scary. As relieved as we were to know that ECMO saved our daughter's life, it was very critical that she not remain on ECMO and the doctors were having a hard time getting her off. Each day, they tried to slowly take Haven off ECMO. Each time she couldn't handle it, she had to be put back on and we were uncertain if she would ever safely make it off life support. Slowly but surely, each day passed, and we kept hoping that our little girl would somehow have the strength to come off the ECMO machine. On the final day, they tried taking her off several times, each time a little bit longer than the last -- until finally -- she was off and with the help of a ventilator she slowly began to do some of her breathing on her own. Several days later, they began to take her off the paralytic, and our prayers were answered when she finally was able to open her eyes and look up at me and Brian.

 

Once, she was fully off the paralytic and breathing without the ventilator, it seemed like everyday more and more tubes, wires, and probes were removed, she started a feeding tube, we finally got to hold her...these were some of the most special days of our lives with her at the hospital. We moved to the recovery floor and miraculously after only one month in the hospital, on April 7, 2010 -- we took Haven home.

 

Haven turned one on March 4, 2011. She had her Glenn procedure in October 2010, and since that surgery, she is growing and thriving. She laughs, giggles, smiles, waves, and even recently, after a lot of hard work in physical therapy, she has started to pull herself up and bear weight on her legs. She is the strongest, most persevering person my husband and I have ever met. She has a calm, cool, and steady way about her that teaches us each and every day we get to spend with her that life is a very precious thing.

 

We know not everyone's story takes the path that ours has - and we are grateful beyond words for the care we received at Children's Hospital Boston and for the village of support we have around us that helped will this little girl into existence. We keep all CHD families close to our hearts and feel great love and admiration for those who are with us and a special love for those whom we have lost.

 

Story by Haven's mom, Molly - Massachusetts