My first child, Bella, was born on December 21, 2009 after a normal pregnancy. I was 4 days overdue and my water broke at 5am. I thought for sure it would take a while so I took my time getting out the door that Monday morning. We got in to a room at 7am and I was surprised to find out I had to start pushing immediately! Birth without an epidural was not part of MY plan, so I was very anxious. After 2 hours of intense labor the girl we had dreamed of came out screaming and pink at 9:05am. She was absolutely perfect! We spent that first day in awe of our precious baby girl. A few lucky family members came that day and got to hold our little beauty and share in our joy.
The following morning our world was turned upside down. The lab tech came in to wake us so she could draw blood. She looked over and saw Bella was blue and having trouble breathing so she rushed her out of the room in a hurry. So fast that I did not even get to see her. We sat alone not knowing what was going on for what felt like an eternity. Different doctors and nurses came in but did not have any answers for us other than she was having trouble breathing and she would need to be transported to another hospital. A short while later a team from Winchester NICU came and we were able to go see her before they rushed her off in an ambulance. I was discharged less than 24 hours after birth and we followed her. We sat in the waiting room while they got her situated and we were updated on her condition by the neonatologist, Dr. Lee. We were able to go back and see her once they finally got her stabilized. Sitting by her side we waited. Hoping and praying. She was given oxygen and nitrous oxide but that only helped for a little while. A few hours went by with no improvement so the they presumed she had PPHN caused by some type of infection. The doctor suggested she be flown to UVA where she may need to be put on ECMO. Due to the weather and her deteriorating condition she needed to get there sooner rather than later. We agreed and they notified the UVA NETS team to come get her. We said goodbye as the loaded her in the Pegasus helicopter. This was the last time we saw her eyes open and fully awake.
We gathered a few things from home not knowing how long we'd be gone and drove to UVA that evening. Early the following morning the doctors agreed she needed ECMO. Walking in to see her after the proceedure was a bit overwhelming. How was it possible for our delicate baby to be hooked up to SO many machines?! She was on ECMO for 4 days and was improving so they decided to remove ECMO the day after Christmas. Not long after she took a turn for the worse. We learned very quickly the NICU is like a roller coaster ride. We spent day after day by her side trying different lifesaving therapies, some of which were founded by March of Dimes research. The NICU personnel was phenomenal. They held our hand the entire time and did their best to comfort our little girl. They were constantly looking to find the next best therapy. The ONE that would make her take a turn for the better. We had so much hope and faith in her care team. After 3 short weeks the doctors were still baffled by our mysterious little fighter. They suggested that we may be up against a very rare and at that time incurable disease called Alveolar Capillary Dysplasia. We made the painful decision to remove her from life support after discussing this with her team on January 11th. In the very early morning of January 12, 2010 Bella took her last breath in her daddy's arms and holding mommy's hand after spending the evening being loved on by family and the NICU team that cared for her. A few weeks later we found out she did in fact have ACD. The medical advances since her passing are simply amazing and give me so much hope. I am happy to report there are a few children LIVING and thriving with ACD after a double lung transplant and now they can do non invasive prenatal genetics testing.
I started walking for MOD a few months after Bella passed and I have since given birth to 2 very healthy boys! I am so thankful to have my boys and to be able to say WE walk for Bella, and for all babies. By supporting my walk you will help improve the health of all babies. Making a secure donation is easy: just click the 'donate now' button on this page. Thank you for helping me give all babies a healthy start.
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