Marin, born 2007On October 11, 2007, our daughter, Marin Avery, was born. She was a healthy 8lb. 11oz. baby and was the happy ending to a wonderful pregnancy. The following day, the hospital pediatrician heard a heart murmur and told us not to worry. A few minutes later, a pediatric cardiologist came in to do an echocardiogram. My husband and I waited silently as we watched the images on the monitor, and prayed that there was nothing wrong. Unfortunately, there was.
Marin had two defects; Double Outlet Right Ventricle (DORV), and a Ventricular Septal Defect (VSD). The combination of her defects was a blessing in disguise; because she was born with the VSD, blood was able to pool in this hole and go where it needed to go in her body. Without the VSD, she would have been blue and rushed immediately to emergency surgery. We were able to take her home, thinking that we would have the next six to twelve months to decide when she would have her surgery.
After being home for only one week, I received a call from our PC that our surgeon at Boston Children's Hospital wanted to do the surgery the following week. So that week was spent planning our trip, and trying to prepare ourselves for what lay ahead.
At 8:30 on Halloween morning, Marin was taken to surgery. What we thought would be a fairly straightforward repair turned into an 11-hour ordeal with two trips to the operating room. The surgery did not go well, and Marin came out of surgery on ECMO and was bleeding severely. She received ten units of blood the night of her surgery, but the bleeding didn't improve the next day. They found the source of the bleeding through a heart catheterization and Dr. Mayer took her back to the OR afterward for another six hour surgery.
Throughout the next few days, the bleeding finally stopped. Marin was kept on ECMO for seven days, and her chest was left open for 13 days. A month after surgery, she was finally taken off of the ventilator and was able to breathe on her own. But still, her heart rhythm was not stable, and the team decided she would need a pacemaker. So on December 5, Marin went back to the operating room a fourth time to have a pacemaker put in. That surgery went very well, and she recovered quickly.
Finally, after 8 weeks in Boston, we were flown home by med-evac to another hospital to continue working on feeding issues. After many unsuccessful weeks of attempts at bottle and breastfeeding, the decision was made to put in a g-tube. The surgery went very well and she was able to come home 5 days later.
After being home for 3 1/2 months, Marin developed a staph infection at her pacemaker site in her abdomen, and we had to return to Boston for 3 more surgeries and a heart cath. We stayed there for the month of May, and have been home since June with no problems!
Our lives have been so blessed by our special little girl, and this has brought us so much closer together and made us appreciate every day with her. I truly believe that God gives these special children to special families that He knows can handle it with His help. As tough as these past months have been, they have strengthened our faith in God and our love for each other. We wouldn't trade it for anything.
UPDATE 2010: Marin is doing great! She had her last surgery in April 2009 to remove her g-tube and close the fistula it had created in her abdomen, and she also had ear tubes placed and adenoids removed. Since then we keep getting great updates from cardiology and electrophysiology, although she will always need her pacemaker, which they say, will require replacement surgery every 5-10 years. We are so thankful for our happy and healthy two year old!
Story by Marin's mom, Anna Claire - LOUISIANA
Rebecca, born 2007