It's CHD Awareness Week!

In honor of Congenital Heart Defect Awareness Week: Feb 7-14, I'm planning to post daily with something "heart" related...so to kick off our week, I'd like to share a testimonial that I was asked to write about Maddie for the American Red Cross. It's being published in their book to let others know the importance of giving blood as well as spreading awareness that lots of babies need blood too! With Maddie's heart surgeries, she was given blood transfusions post-op to help with her counts and to give her a boost for healing. The by-pass machine can also be primed with donor blood prior to being put on heart/lung bypass, so the importance of this is critical with heart surgery patients. About 40,000 units of blood are used every day yet only about 5% of adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often a heart child. We have learned first-hand what a gift it is. So for most of you, this is a little "recap" of our little sweet'heart'...
I never thought I’d know so much about the human heart, especially what could go wrong with it but when our third child was prenatally diagnosed at 26 weeks with a Congenital Heart Defect (CHD), a new world opened up for us. Our baby’s heart may have been broken but our hearts were shattered that day. We learned that without intervention, she would not survive and we were given three options: termination of the pregnancy, a three-staged surgery, or the comfort care method which was to take our baby home and let her pass away. We were lucky to have the surgical option and chose the three-staged operations route. Our “heart journey” quickly began.

Madison Grace Allred, “Maddie” unexpectedly joined our family on March 13, 2008, arriving a month early by an emergency, crash c-section at the University of Washington Medical Center in Seattle. Her birth was a very scary experience and we all feared the worst with her early arrival, but we quickly learned that our 5 pound baby girl was tough and would overcome any obstacle that came her way! After stabilizing Maddie, she was transferred to Seattle Children’s Hospital Cardiac Intensive Care Unit where her CHD diagnosis was confirmed: Pulmonary Atresia with Intact Ventricular Septum, Ebstein’s Anomaly, Atrial Septum Defect, Patent Ductus Arteriosis and Hypoplastic Right Ventricle. In short, the right side of her heart was severely underdeveloped and simply non-functional. On day 6, Maddie underwent her first open-heart surgery called the BT Shunt which basically created a bypass to get the blood to her lungs for oxygenation since her own anatomy did not suffice. She did fairly well post-op and after spending her first 19 days of life in the hospital, she was discharged and finally able to come home! It was a bitter sweet moment for us. Maddie needed a feeding tube the first few weeks after coming home but finally regained enough strength to orally bottle feed. But we knew that our stays at Children’s were not over…in 4-6 months, she would outgrow the shunt and need another surgery in order to survive.

At exactly 4 months of age, Maddie underwent her second open-heart surgery called the Bi-Directional Glenn. She cruised through her recovery and was home just 5 days after another big heart surgery! With each surgery, she was given blood to help with her counts and help give her healing a boost. Donor blood is also used to prime the bypass machine, so we have learned, first-hand, the importance of giving blood and my husband and I have now become regular blood donors.

Since her Glenn surgery, Maddie has been growing and thriving. She is developmentally on track despite her early birth, hospitalizations and procedures she’s endured. By looking at her, you would never know she has such a special heart. She is cyanotic (bluish tinge to her skin) since her oxygen saturations hang around 80. She is on only 2 medications and we visit her cardiologist every 3-4 months now. We are waiting for her third open-heart surgery called the Fontan Procedure which is usually done between 2-4 years of age. Upon completion of this stage, her heart will function as a single-ventricle, the left side of her heart doing all of the work while blood just passively flows to her lungs. She will be a single-ventricle or half-heart for her lifetime. Even though we are not “out of the woods” yet and coping with a heart defect is not easy, Maddie has shown us a strength that we can all admire and strive for. She is our little miracle and brings such HOPE to our family! We thank God every day for the gift of Miss Maddie and the many blessings that she has brought to our family!