Her Story

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. Our “heart journey” quickly began.

Madison Grace- night before her first surgery

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 18 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.

Maddie after her first surgery, BT Shunt - 9 days old

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.

Bi-Directional Glenn Surgery, her second open heart - 4 months old

Happy parents on discharge day!

A diagram of Maddie's heart defects

After her Glenn surgery, Maddie really took off. She was developmentally on track despite her early birth, hospitalizations and procedures she’d endured. We were able to have a two year break from surgery and during this time, life became normal again for us. A new normal...since there isn't a day that goes by that I didn't think about her heart. I just didn't think about it every hour, like I did back then. Though she was cynotic (blueish tinge to her skin/lips from low oxygen levels) you couldn't tell she was born with such a special heart. She was on quarterly visits to the cardiologist and only on asprin. Her O2 sats were in the lower range of 72-78%, so when she reached the size for her Fontan surgery, it was scheduled.

In May 2011, Maddie underwent the final stage of her palliative repair. Prior to this surgery, I was more worried about the toll it would take on her mentally than I was with the physical aspect of healing. But in typical "Maddie style", she had a fairly smooth recovery and handled it all very well. She was readmitted with pleural effusions after being home for a week, but our total time spent in the hospital after the Fontan surgery was just 2 weeks. She was such a trooper through it all. Her heart now functions 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. We have seen so many changes in her since her surgery. She had a growing spurt, her personality really blossomed and she's so outgoing! Prior to surgery, she was very tired, sluggish and just didn't feel well so this change in her has been so incredible for us to see. She's a spitfire somedays...and we welcome that energy around here. Her heart agrees with the Fontan and we couldn't be more grateful. We are thankful to her surgeon, Dr. Mike McMullan at Seattle Children's as well as her cardiac team, for giving Maddie every opportunity to live a healthy life.

Maddie's Fontan, May 2011, 3 years old

Maddie, mom and her heart surgeon, Dr. McMullan on discharge day after her Fontan

Even though coping with a heart defect is not easy, Maddie has shown us a strength that we can all admire and strive for. We have learned so much through this journey...God has shown His grace upon us many times. She is our little miracle and brings such HOPE to our family! We thank Him every day for the gift of Miss Maddie and the many blessings that she has brought to our family!

Proud big brother's at the Festival of Trees- sitting by Maddie's tree

Maddie 2 years old- photo by Brittany Kluse

Maddie 3 years old- photo by Michele Jansen

age 3 1/2- photo by Jessica Greenfield

age 4 1/2- photo by Jessica Greenfield

age 5