‘Don’t freak, but she needs to go to the hospital.’ She told me to NOT google it. Of course, I did. Her body started swelling.’: Baby diagnosed with Biliary Atresia, undergoes liver transplant, ‘She’s full of life’

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“Mila is our third baby girl. She was born without complications; she was perfect, and we were smitten. She fit right in to our family, and I believed I was blessed once again with an ‘easy’ baby. She ate well, slept well, and was most content being held. We always received compliments about how beautiful all of our daughters were, but the main comment about Mila, was how she had a ‘golden’ glow to her. I attributed it to the Hispanic in her, and I figured she would be one of those lucky girls who bronze and not burn in the sun. As she was nearing two months, I noticed the whites of her eyes were not as white as they once were. It was kind of odd, but I remember thinking of how my sister’s eyes have a unique gray tint to them, and I figured maybe Mila would also share that uncommon trait.

I remember, one day, sitting with a friend at a mall play-date. She also made comments on Mila’s appearance, and it started to not sit right with me. So, I did what any curious mom would do… I googled it. ‘Liver disease and dysfunction’ returned in my search, but I did what any rational person would do. I thought, ‘That’s crazy! There’s no way!’ and filed it away under the ‘that would never happen’ section of my brain. Then, one day, after picking her up from a church nursery, one of the babysitters said she had a very colorless diaper. I thought, ‘Weird,’ and not much else of it. We had an upcoming well check, and I figured I’d mention it then, but nothing to really worry about it seemed.

Her two-month well check. The day our world was flipped upside down. It started off with pleasantries. I had all the good news to report: eating well, sleeping well, generally, just another happy, content baby. Then it was time for the physical exam. The doctor gave her belly a squeeze, and a concerned look came over her face. She cautiously said her liver felt enlarged, and not to freak out, but we would need to take her to the nearest children’s hospital for further examination. She also told me to NOT google it; it would just scare me, and there was no point in doing so or getting ahead of ourselves. So, of course, I googled it. More about liver disease came up. I wasn’t going to entertain such a far fetched thought, so I once again brushed it off. Both of Mila’s grandmas were very concerned when we shared the update and told them we were taking her to the hospital for further testing. They wanted more information, but I didn’t have the answers, and I didn’t want their fears to feed mine. By this time, that ‘crazy’ thought of something so severe being wrong, didn’t seem as impossible anymore.

We spent that entire day at the hospital, into the night. We held our newborn as she was poked and prodded for more blood for testing. I remember one of the phlebotomists saying they would possibly need to draw blood from her head if they couldn’t get an arm/hand vein. Thankfully, they didn’t have to. I couldn’t stand all the failed attempts and screaming. I had to leave the room, and her dad held her while she silently cried. We tried to comfort her as she had a transducer shoved into her abdomen for an ultrasound. I remember holding her as she was exhausted from it all, and a resident calling her a ‘cheeto baby,’ due to her jaundice. Jaundice, not her ‘golden’ tan skin.

Courtesy of Katrina Compton

After all the testing, they sent us home that night, since all the doctors wouldn’t be in until Monday to follow up. We remained hopeful, as worrying does no good. When we heard back, it was just to receive more testing. More blood, urine, and sweat. The doctors needed to continue to rule out stuff they had hoped to. We finally had an appointment with a doctor, and he didn’t deliver much hope. He told me, though they didn’t have a definite diagnosis, they believed she could possibly have a pediatric liver disease called ‘Biliary Atresia.’ If she had that disease, the outcome could be bleak. He also mentioned how, if she had this disease, 1 in 3 kids don’t make it.

That’s when I started to get really scared, as the worst case scenario started to sink in. Can you imagine googling symptoms and the worse case scenario/possibility being a reality? What a nightmare. Honestly, that’s what it was like after that. While waiting for more labs, I googled ‘biliary atresia,’ and ‘liver transplant’ was in just about every click. That’s when my thinking switched from ‘never’ to just now knowing that could very well be the outcome. That was the first time I broke down and cried with my mom over the phone.

After that, we did the serious testing to pin down a diagnosis. We did a HIDA scan, where a radioactive tracer is injected into the vein to trace the path bile takes through your body. Mila’s never made it through her body because it was discovered her liver didn’t drain bile, confirming her diagnosis. After that, a liver biopsy was performed to finalize the diagnosis and to see how ‘sick’ her liver was. The doctor said if zero was a perfectly healthy liver and 10 was a very sick, failing, damaged liver, Mila was about a 5 or 6. So, well on her way to end stage. At just three months old, Mila received her first surgery, a Kasai. This surgery was to try to delay the need for a liver transplant. Her doctor said he thought it would be a 50/50 chance. It failed.

Over the next couple of months, Mila’s liver grew sicker, as did she. She wasn’t growing or gaining weight. She wasn’t hitting milestones. She wasn’t thriving. She started to have internal bleeds. Her body started swelling up and retaining water. At this point, we were at the hospital at least three days out of the week for testing, appointments, labs, or infusions to keep her water retention and swelling down. At five months old, Mila was placed on the waiting list for a liver transplant. To bear the brunt of the added medical expenses, my husband started to take travel contracts, for the higher pay. So, I was largely on my own during the waiting period.

Courtesy of Katrina Compton

The night of Father’s Day, my phone rang around 10 p.m. from an unknown caller. Honestly, I figured it was another creditor calling for collections, because our family was not only dealing with having a sick child, but we were financially suffering as well. I was wrong; it was ‘the call.’ I immediately broke down from relief and obviously, fear. We took Mila to the hospital to prep for transplant and undergo a bunch of testing. We finished around 2 a.m. and were woke up a few hours later to be told the liver wasn’t a match, and we could head home. I was crushed for my daughter. I was so ready and anxious for her to get to the ‘other side’ of this, where she could begin healing instead of growing sicker day by day. We went home. I had to mentally accept we could be waiting for months more.

One month later, we received another call. This call came in the morning. I was told they had a possible match for Mila, but to not get our hopes up, because it was most likely not going to be a good fit. I was told, ‘You don’t even have to come in for this if you want to just pass.’ Despite their doubts, I decided to bring her in, because I wanted to grasp any little glimmer of hope. So, I drove myself and Mila to the hospital to begin the pre-testing once again. Turned out, it was a match for Mila. I handed my 9-month-old baby off to a surgeon, around 6 a.m. on the morning of June 26, 2015, for her gift of life.

We spent the next 21 days living at the hospital while she recovered. Though it was all a bit of a blur, or my mind has repressed much of it, I won’t forget the first time we saw Mila in recovery. There were an alarming amount of wires and machines hooked up to her. She barely opened her eyes while we were in there. The first week or two, we were in the PICU, which is not a place for the faint of heart. The PICU is a tough place to be — walking those halls, and hearing the cries. Did I mention I was also in my second trimester of pregnancy with Mila’s little brother? If you are a parent who has slept in hospital chairs, imagine doing that 20-something-weeks pregnant. Did I also mention my mom (Mila’s grandma) was undergoing treatment for her second round of cancer? At one point, I was literally walking a bridge back and forth that connected the children’s hospital to the cancer center, ping ponging back and forth between their hospital rooms. All while my husband was laid-off for needing the time off work to help with watching our other children at home. It was one of the most trying times of our lives.

Courtesy of Katrina Compton
Courtesy of Katrina Compton

After three long weeks, we were sent home to begin her post-transplant care on our own. I feel like I should have earned some sort of certification or degree in healthcare with all the knowledge I had to retain — countless medications, NG tubes, JP drains, dressing changes, flushings, preparing tube feedings, giving her shots to help thin her blood. If somebody asked me how to flush a port today, I’m not sure I could do it without refreshing my memory, and for that, I am grateful!

Courtesy of Katrina Compton

Life hasn’t slowed down too much post-transplant. We’ve had our number of issues afterwards, which is to be expected. The first year was the most difficult, as Mila had to undergo several more procedures to keep her veins open, battled several episodes of rejection, was diagnosed with EBV induced hepatitis, and every cold landed her a hospital stay (some even more frequent than pre-transplant).

Courtesy of Katrina Compton

At one point, I struggled so much to find childcare for my other children while she was admitted, that it was suggested I turn them over to ‘Safe Families,’ an organization that helps temporarily home children in situations such as this. My mom had passed from cancer, our other family was too busy to help, I felt I was burdening my friends, and my husband was once again working travel contracts to help offset the medical costs. I knew something had to give.

Once Mila’s health started to stabilize, we made the decision to let go of our life and our home and begin traveling with my husband to keep our family together. So, that’s what we did. We packed up our family van and hit the road almost three years ago. We left Illinois for Oregon. We then moved on to California, Montana, back to Illinois, Mississippi, New Jersey, and we have recently settled down in Utah near Salt Lake City.

Courtesy of Katrina Compton
Courtesy of Katrina Compton

Mila has literally had ZERO hospital admissions since we began traveling; it’s truly a miracle. She has climbed mountains, swam in oceans, seen the Statue of Liberty, and met Minnie Mouse at Disneyworld for her ‘Make a Wish’ trip. She has literally done and seen more in her four short years of life than I have in my thirty five.

Courtesy of Katrina Compton
Courtesy of Katrina Compton
Courtesy of Katrina Compton
Courtesy of Katrina Compton

Mila is always up for our next adventure. She is full of LIFE, thanks to her organ donor. I cannot stress enough how she is ONLY here and alive because of her donor. There are never enough, or the right words, to express that truth. My child is only alive because someone else lost theirs. A mother out there turned her loss into our gain and gave us HOPE for a future with our Mila.

Courtesy of Katrina Compton
Courtesy of Dani & Co Photography

Mila is enjoying our newest adventure of hopefully settling down, laying roots, and rebuilding our life here in Utah. We will be hitting a huge milestone this fall; my baby is going to be starting school! Yes, it’s very unfortunate school won’t be normal for her this year. But, being that she has been and will always fall into the ‘high risk’ crowd, we aren’t going to let that hold her back from living her life to the fullest. When you’ve been dealing with your own personal ‘pandemic’ for almost five years now, you learn how to adapt and carry on. My hope is this story inspires people to check the box on your license, inform your family you’d like to give the gift of life, and register to be an organ donor. Be encouraged there are people out there, just like Mila, who are waiting on their gift.”

Courtesy of Katrina Compton
Courtesy of Katrina Compton

This story was submitted to Love What Matters by Katrina Compton of Layton, UT. You can follow their journey on Instagram and Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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