On Mother’s Day in May of 2015, my husband and I had a discussion regarding adopting. He wanted to adopt and I wanted to wait. But after more conversations and much devoted time in prayer, we both decided to pursue adoption before trying to conceive a biological child. I had seen a picture of a little girl from China with a cardiac condition that needed to be adopted in order to have a lifesaving cardiac procedure. We began investigating her case and quickly realized we were not eligible to adopt from China due to qualifications they had set in place that we were not able to meet. So, we prayed and researched and decided on doing a domestic adoption from the US. I had one caveat to the process though – we had to be open to children with medical needs. As a NICU nurse, I knew the number of children with medical needs that were placed in medical homes or medical foster care because no one wanted to adopt them. And, with my skill set, I knew we would be able to offer incredible care to a child with special needs.

We began the adoption process in June of 2015 and we were cleared and ready to adopt by the end of October 2015. God had provided all the necessary funding and so clearly made every step evident that we were right where He wanted us. Through a series of events that only God could ordain, we saw a picture of a little girl from China who was born here in the States with a life threatening medical condition. Her birth parents had no idea anything was wrong with her at the time of delivery and were planning to head back to Beijing, China after her birth. However, at 24 hours of life, Abigail became very sick. She was rushed to the NICU and doctors from every specialty came to figure out what was going on. The quick thinking of the metabolic doctor is what saved her life. Abby’s newborn screen was expedited for processing and came back with the devastating news that Abigail had Methylmalonic Acidemia, or MMA. MMA is a genetic disorder. Kids with MMA don’t have the ability to breakdown protein because their genetic makeup does not have the capability to make the enzymes that breakdown protein. Therefore, protein builds up in the body and lets off a byproduct called Methylmalonic Acidemia which is lethal to the body. When levels become too high, it can cause blindness, deafness, cardiac issues, strokes, seizures, and frequent hospital stays for imbalance of electrolytes.  Once Abby was stabilized, the team had to have a frank conversation with Abby’s birth parents, Jing and Wei. The closest hospital to Jing and Wei that cared for children with MMA was a 2 hour flight from Beijing to Taiwan. So, they were given a few options. Take Abby home knowing that her life expectancy with the limited resources in Beijing would only be about 4 weeks; place her in medical foster care in the USA and try to gain citizenship and move to the US; or, place her for adoption and allow someone else to raise her as their own. Jing and Wei chose the latter. They knew it would be best for Abby. So, they made the selfless decision of placing their daughter with total strangers trusting that they would care for her just like their own daughter. And they chose us.

Abigail had already been in the NICU about 4 weeks when we became her parents. She left the NICU at about 5 weeks old and at that time was doing well. She was on a few medications, a special formula, and was taking a bottle like a champ. However, over the course of the next several weeks, Abby’s desire to eat began declining. Every bottle was a fight. She was hospitalized a few times and we decided to try an NG tube. We did NG tube feeds for 4 weeks and realized this was going to go on longer than just a few months. So, in March of 2016, Abigail had a G-tube placed. This would allow us to bypass her mouth and feed her straight in her stomach. One of the issues kids with MMA have is eating. At a certain MMA level, the feeding center is affected in the brain and begins telling the person not to eat. The G-tube was a lifesaver! Though we had the G-tube, Abby continued to have metabolic crises. Throughout the course of her first year of life, we spent many, many days in the hospital stopping feeds, getting IV fluids, and trying to help her continue to grow and thrive. In November of 2016, the nurses could not get IV access. We watched in horror as Abby began declining right in front of our eyes as no one was able to get IV access on her. 3 hours later, a nurse was finally able to get an IV and Abby was stabilized. It was at that point we decided to have a vascular port placed in her chest so that we would never have to wait for IV fluids again.

We entered 2017 hopeful that Abby would have a better year. Though it had some really great moments, Abby continued to have several metabolic crises. In July and October of 2017, we spent more time in the hospital than we did at home. The biggest decline we saw was in Abby’s blood levels. Abby was starting to routinely need blood transfusions with hospital stays and was having a hard time bringing the levels back up on her own. Her bone marrow was now taking a hit. Because Abby’s metabolic crises were so frequent, the bone marrow did not have time to recover in between each episode. After many hospital stays, frequent transfusions, and no improvement in Abby’s bone marrow, our metabolic team decided it was time we talk about a liver transplant.

Unlike other children who are waiting for a liver, Abby’s liver is not diseased. In fact, her liver looks pretty healthy. Until you look at what it can’t do. Because Abby’s disorder is genetic, she will never have the ability to make the enzymes her body needs to breakdown protein. And, because she can’t breakdown protein, her MMA levels can rise at any minute and cause severe complications, some of which we would not be able to reverse. The liver is where the enzymes that breakdown protein are created. With a transplant of a healthy liver into Abby’s body, she would get all the enzyme activity that the new liver would come with hence, breaking down protein and bringing Abby’s MMA level down. This is the closest thing that there is to a cure for MMA at this time. With a new liver, we’ve been told Abby should have no more metabolic crises, her bone marrow should begin to heal itself and work better, and we may even see her drive to want to eat come back and no longer have to rely so heavily on the feeding tube. Abby also has global delays and has needed different therapies her whole life. Having this new liver should help her learn more effectively, have energy and muscle memory to play and keep up with the big kids, and hopefully help her walk.

Abby is now two and a half years old and we continue to have an open adoption with her birth family. They visit every year and are so grateful and thankful for all that has been done in order to give Abby life. Abby also has a little brother, Andrew, who is seven months old and was a gift from God after trying over a year to conceive. Life is crazy and full at our house, but we love it and we are so thankful God pricked our hearts to adopt and that we chose to say YES! Abigail is one of the best decisions we ever made!!

 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.