Makelle's Story

“The Little Liver that Could…”

In January 1998 I began using that phrase to encourage Makelle as a tiny infant struggling with a newly diagnosed liver disease “Biliary Atresia.” “I think I can…I think I can…” I would whisper to her tiny little liver.

 For almost 13 years my little trooper Makelle has overcome many odds and has lived a miraculously healthy life despite many health challenges. I think many people have had a hard time believing or even understanding just what was really happening inside of this courageous little sweetheart. Over the years she’s had nothing to show on the outside but big bright eyes and a smile that could melt your heart!

On November 7, 1997 this beautiful baby girl was born. Within 24 hours of her birth I noticed she became very jaundice. They checked her bilirubin levels and told me they were quite high and that we should start her on the bili lights right away. For a newborn I noticed she was not sleeping very much. As the nurse pushed Makelle and me out of the hospital in the wheelchair to head home, she was crying in pain. In the days that followed we would have close to 9 hours straight of crying and fussiness.

As the weeks went by I went back and forth to the pediatrician trying to figure out what was wrong with my baby. “Colicky Sorry Sally” was all I got. Or maybe it’s an ear infection… week after week I was tormented knowing that something was not right, but unable to get any answers.

The weekend before Christmas 1997 when Makelle was almost 6 weeks old, she got a rash. I took her into the after hours Doctors office. He took one look at her and said, “This baby has a liver disease.” And then our world was turned upside down. We were sent to Primary Children’s Hospital where after an agonizing day of hydascans and liver biopsies, we were given the dreaded diagnoses of Biliary Atresia. She was scheduled for a major surgery the very next day (Christmas Eve and my birthday). The surgery is called a Kasai, it is not a cure for the disease, but in a percentage of the children with Biliary Atresia it helps restore bile flow and helps them grow before eventually needing a liver transplant.

Immediately following the Kasai the news was bleak. Makelle had the severest form of the disease and the bile ducts were so tiny and blocked that there was not a lot of hope that the Kasai would work. We started the transplant work-up, but something in my heart said we would be ok. I turned it over to the Lord and asked that his will for this little angel would take place.

I was so heartbroken to see my sweet and beautiful baby so sick and covered in life saving tubes and bandages. I could not let a single picture be taken. It hurt so much and I just wanted the images of what I was seeing to go away.

And then the miracle began. Makelle began getting bile flow in her liver. Our surgeon had told us shortly after the surgery that it would have to be like molecules lining up for anything to flow through her biliary tract. But they did, and for the past 12 years the “little liver that could” has given us the miracle of our Makelle living a very normal and healthy life. Not without its bumps (later we learned of kidney problems that brought its own set of problems and surgeries). She has had complications associated with the liver disease, portal hypertension and a very enlarged spleen. But the majority of her life so far, we were able to forget that the disease was even there.

What a miracle…and when the bile started flowing through “the little liver that could” I started taking pictures of my little girl again.

Newborn Makelle

Makelle at about 3 weeks old. (Before diagosis...about the time I was dragging her back and forth to the docs trying to get them to believe me that something was not right.) You can see that little grimace on her face.....makes me sad knowing how much pain she must have been in.

                                          

Makelle home after Kasai

This was taken about a month after her Kasai surgery.  This is about the time she started really improving and getting bile flow.  The jaundice was going away and was the beginning of the miracle of a healthy life! The tube in her nose was a NG feeding tube. She had this tube for a couple of months after surgery. (This is the first picture I took after not being able to take any throughout the whole surgery ordeal.  I regret not taking pictures! Makelle wishes she could see what it was like for her.)

Makelle and Kaden

This was taken when Makelle was about 6 months old.  It was when she really started getting her strength and energy and her skin was really looking good! Bye Bye jaundice! Hello healthy bright eyed Makelle. Kaden had always been such a loving brother! (Don't you love the out of control hair she had that stood straight up? I tried for a while to think of cute ways to fix it, but it had a mind of its own, We gave up and let it do its own thing! I think it went well with the bright eyes and sweet little smile!)

Makelle's First Birthday

Healthy Makelle at her one year birthday! Definitely a day of celebration and gratitude for how blessed we were to have such a healthy girl after all she had been through!