April 10th, 2013 was one of the best days of my life. Madelyn Mary
entered my world. My heart, my soul would never be the same again.
Bright blue eyes, strawberry blonde hair, rosy cheeks, she was
perfect in every way.

My pregnancy with Madelyn had been uneventful. Just like some
newborns, Madelyn was jaundice at birth, but overall, she seemed like
a healthy little girl. After the standard couple of days in the
hospital, we went home. Madelyn was dressed in her pink elephant
pajamas, the sun shining. It was truly a beautiful day.

During Madelyn’s, initial pediatric checkup, I mentioned to her
pediatrician that although Madelyn’s skin color was now a perfect
rosy pink, indicating that Madelyn’s jaundice was resolving, I had
noticed the slightest yellow tint in the corners of the whites of her
eyes. I remembered her pediatrician stating that in addition to the
standard jaundice blood drawl and other newborn screening tests, she would add one more to assess Madelyn’s liver function. Being a new
mother and being naive, I did not think that there was anything
wrong with Madelyn. She seemed healthy and her pediatrician also felt
the yellow tint in Madelyn’s eyes was most likely related to newborn
jaundice.

At 8:00 am, the morning following Madelyn’s pediatrician visit, I
received a phone call, it was Madelyn’s pediatrician. Stoically and
calmly I remember her stating, “Amanda, the labs we drew reveled that something is wrong with Madelyn’s liver. You need to get her to Texas
Children’s Hospital now. The liver team is waiting for you.” I do not
remember much else after that call, but I remember frantically calling
loved ones and throwing clothes into a bag. I remember it was storming
and raining and the streets were flooding as we frantically drove to
the medical center. It was as if everything was falling apart. I
remember looking at my sweet girl in her car seat. She was so tiny,
dressed in her ballerina jumpsuit. She was so calm, so brave.

After a week of brutal diagnostic testing, Madelyn was diagnosed
with Biliary Atresia. Biliary Atresia (BA) is, ” a serious liver disorder
that occurs before or shortly after birth when a baby’s bile ducts
(the tubes that carry bile from the liver) become blocked. The body
needs bile to aid digestion and carry wastes from the liver out of the
body. When blocked ducts prevent bile from being excreted, the liver
becomes damaged, resulting in liver failure.” Biliary Atresia is
extremely rare, not genetic, and is silent in that it is not detected
during pregnancy.

I will always remember the face of her liver doctor, walking into our
room, tears in her eyes, as she told us that in order for Madelyn to
live, she would need a liver transplant. However, at the time, Madelyn
was too little for a transplant. In order to “buy time” for Madelyn to
grow and become strong enough for a liver transplant, she would need a
specialized surgery called the Kasai, in order to attempt to
temporarily decrease the stress and damage being placed on Madelyn’s liver. Surgery was scheduled for the following day.

On Madelyn’s one month birthday, my tiny warrior was carried into the
operating room to undergo one of the many medical procedures aimed at
saving her life. After a grueling morning and afternoon in the
surgical waiting room, we were able to see our tiny warrior, she had made it through the surgery with flying colors.

Following Madelyn’s initial diagnosis of Biliary Atresia, the
complications associated with her disease frequently reeled its ugly
head. We found ourselves frequently at Texas Children’s Hospital.
Madelyn’s liver disease was progressing quickly and so her liver team
worked frantically to provide the tools that Madelyn needed to help
her grow for transplant. At one point, Madelyn was connected to a feeding tube 24 hours a day, 7 days a week. This tiny child who
had a feeding tube in her nose, a PICC line in her heart, never
stopped smiling. She never stopped seeing the world with so much joy
and enthusiasm. She rarely fussed, she rarely cried. She was named, “Miss Happy” on the” liver floor “of TCH, because she was always truly
happy, truly joyful, no matter the circumstance. For 8 months, Madelyn battled liver failure and all of the horrible complications that are associated with the disease. So on December 15th, 2013, when we received “the call” that there was a liver for Madelyn, I felt as though it was Christmas Day. Finally, my baby, would feel good, finally she would be free of all the tubes, the machines, the pain. She would be able to finally live! 

We rushed to the hospital with high spirits, with high hopes! It was truly a gift. 
In the early hours of December 16th, I held my sweet baby in the surgical waiting room, waiting as her surgical nurses finalized last minute details for her transplant. She sat in my lap, playing with a granola bar wrapper in her hand. She twirled it around in the air, placed it in my face. Smiled. When it was time for her to go to the OR, her nurses carefully scooped her from my arms, reassured me they would watch over my baby girl. I kissed her, told her I loved her. She waved “bye-bye”.  I felt relief, relief that finally Madelyn would have a chance at life, finally no longer have to suffer, and finally be able to live the life she so deserved.

Madelyn’s surgery went beautifully. There were no complications. However, as the hours and days after transplant progressed, it became apparent that something was wrong with Madelyn’s new liver. Surgeons summarized that Madelyn’s body was rejecting the new liver and she was quickly going into rejection and needed to be “re-listed”. There were several opportunities for new livers which the doctors explored, and unfortunately those offers were not the right match for Madelyn. At one point they allowed myself to be assessed to be Madelyn’s live donor, which at the time live donors were not a great option due to high complications. I was unfortunately not a match. 

She was quickly  deteriorating and one by one each of her organ systems were also failing as well. It was around this time, that doctors made the decision to pull Madelyn from the transplant list, as she had developed sepsis and would not be able to survive a transplant. Devasted does not even describe my emotional state that day. I felt as though my heart had been ripped from my chest.

On December 25th, Christmas morning, Madelyn “coded.” Doctors performed extraordinary measures on her that day, determined that she would not pass on Christmas Day. On December 26th, after days of “yelling” at God, I remember I was washed over with an overwhelming peace. This perfect peace. It was as though I knew that the miracle I wanted, the miracle that Madelyn would survive and wake up and be on this earth with me was not the miracle intended for Madelyn. The miracle that I had been desperately seeking was for Madelyn to be ultimately healed. Healed in Heaven. Truly healed. At this point, Madelyn was in full organ failure and had suffered significant brain damage. IF she survived, her quality of life would have been poor. We made the difficult decision that day to let her go, to set her free.

December 26th, 2013 was the worst day of my life. Nurses carefully placed my sweet baby, in my arms. I gazed at her sweet face as tubes and lines were carefully removed from her battered body. I stroked her strawberry blonde hair which had started to develop curls. I begged God to show me He was truly there, to send me some sign. You see Madelyn had experienced significant brain damage and most likely had suffered some paralysis, which was evident as she lost movement in her face. However, as she took her last breath, my Madelyn gave us the most beautiful, peaceful smile and then she flew into Jesus’s arms. I can only imagine it was at that moment He scooped her up and he took her to Heaven.

Madelyn was one of the bravest people I have ever met. My co-workers had even stated that Katy Perry’s song “Roar” was written about Madelyn, because she was such a fighter. She endured more pain than any child, than any person should ever endure. Yet, this child smiled through it all. She was happy. She truly illuminated joy to all those she met. Though her life was incredibly short and her world incredibly small, Madelyn and I made so many memories. Whether it was going on a walk on beautiful sunny day, watching the tropical fish in many of TCH’s fish tanks, to singing and dancing around a room, our world was full of so many happy memories, which I am so thankful for.

It will be 6 years, this December since I was able to hold my baby girl. Losing a child is a journey. It truly is. As I have walked this path, I have met incredible nurses, doctors, friends, mamas who have supported and loved on Madelyn while she was here on this Earth and then loved on me after she went to Heaven. I continue to grieve her deeply, but I have found beauty along the way. I am still so thankful to her liver donor. Although Madelyn’s transplant did not go as planned, I am still so thankful she was given the chance of transplant. Sadly, many children die waiting for organs.

In 2014, I had the chance encounter of seeing one of Madelyn’s liver doctors. He just happened to be in the area for his child’s soccer game. We hugged and he told me he had wanted to reach out to me to let me know that the hospital Madelyn had been born at was implementing screening for biliary atresia to every newborn baby born at their hospital. To test for BA, it is  just one extra blood test. I was so touched to know Madelyn had impacted this hospital in such a way, that her story could help other children as well. In 2015 and in 2017, Isaac and then Oliver, Madelyn’s two little brothers entered my world. I see parts of her in them. Isaac has her blue eyes and her sensitive heart, Oliver shares her joyful spirit. Though they are still young, they are learning about their big sister in Heaven, who watches over them and loves on them every day.

I still at times question God and my heart hurts a little bit more when I see a beautiful dress in the girls’ clothing section and wish I could snatch it up and dress Madelyn or when I see a little girl – as I yearn for my sweet daughter and for the color pink in my life as well. However, I cling to Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” This journey has not been easy, nor at times made sense or seemed fair, but I feel it has shaped me as the person and the mother I am today.

Madelyn taught me to never give up, to find joy in the small things, to find beauty in this world, to reach out to others in need. I miss her deeply but I am determined to live out her legacy. To make her proud. She is my hero.

Till the day we meet again, I love you forever and always Madelyn.