Catherine Woodley and her husband, Dave, knew they wanted to be parents, and they knew that they wanted to adopt before trying for any biological kids. Specifically, the Pennsylvania-based couple hoped to adopt a child with medical needs, who might otherwise struggle to be placed with a family. Catherine is a nurse and felt certain she and Dave could help.
Soon after they decided to adopt, Abigail came into their lives. Abby, as the couple calls her, is now four and she has a rare inherited disorder called methylmalonic acidemia, or MMA, which means her body is unable to process fats and proteins from food. That creates a toxic buildup of acids in the body, which can lead to many harmful symptoms. Abby’s case is severe.
“We knew what could happen [with her condition] before we adopted her, and then we were kind of hit with every complication possible,” Catherine told HuffPost. “Kids with MMA — we call her our little MMA fighter — can have feeding difficulties, mental delays, physical delays, all the way up to seizures and stroke.”
Abby’s case was so severe that when she was 2 years old, she required a life-saving liver transplant, which Philadelphia-based photographer Meg Brock captured.
Here, in her mother’s words, is a bit of Abby’s story.
Abby was born, and then she got sick pretty much right away. Her birth parents are from China. They were here in the United States when she was born, but because of their visas they knew they had to go back. They knew they did not have the medical capabilities to care for a baby like her back home, so they made an adoption plan. And we adopted her.
The prognosis for her disease is so poor, they told us at the time there was a good chance she wouldn’t live to be a year. [The agency] asked us, “Do you still want to adopt her?” We said we would give her the best life for however much time she had.
Right away, she had feeding difficulties. At three months, Abigail stopped eating bottles. She was on a feeding tube for four weeks, and she ended up getting a g-tube [a gastronomy tube that brings nutrition directly to a child’s stomach]. Because Abby’s body can’t break down protein, she’d constantly become very sick. Basically every four to six weeks, she’d get really sick, she’d be admitted to the hospital, we’d get back to some kind of equilibrium and go home.
But then in April of 2018, Abigail’s bone marrow basically started shutting down. At that point they basically said to us, “Guys, the next time you come in might be the last time you come in. If we don’t do something to try and fix the underlying condition, she’s not going to make it.”
One of the biggest “cures” — and it’s really not a cure, but something that can help — is a liver transplant. The new liver can help produce the enzymes that break down protein. She was listed on the national transplant list in May 2018, high up. We were told to pack our bags, because we could get a call at any point saying we need to come in.
In August 2018, on a Saturday afternoon, we got that call.
She took the liver great. It was about a 12-day stay for her transplant.
One thing that has been very difficult for me is not going into nurse mode. That was really true right after we adopted Abby. I had this point where I realized that my husband, Dave, was more emotionally attached to her than I was, and I just started sobbing. I was seeing her more as a patient than my child.
So that has been a journey for me. There are still times that I have to remind myself that I need to be OK with other people making medical decisions for her. I can just be mom. I can just love her. I don’t need to hang her tube feeds or give her her meds.
Abby gets Medicaid because of her diagnosis, and I also have insurance through work. We have never seen a medical bill for her, which is unbelievable. I cannot imagine what it must be for other families that don’t have that. We have never had to think about whether we can afford an intervention. If one of her doctors says, “There’s a new treatment we might want to try,” we haven’t had to say, “Well, if it’s just a ‘try’ we don’t think we can afford that.”
We’ve calculated some of the costs, and the transplant alone was around $1.6 million.
One of the things that Dave and I didn’t realize until after the transplant was how much she was fighting every single day just to live. She was tired all the time. She wanted to sleep a lot. Occasionally, she would laugh and giggle.
Now she’s...joyful. She is rarely ever sad. A year out from the transplant, she started wanting to eat again. She learned how to walk when she was 3-and-a-half. She still doesn’t talk much, and she was diagnosed with autism in March of last year, but she is funny. Abby loves to stack things. She stacks things on your head, on the TV, on the windowsill. She loves to play chase. She can’t run, but she thinks chase is hilarious because it makes her move. We have two younger sons now, and I do not think she notices any difference between herself and them. I do not think she understands how sick she is.
We travel, which was a big thing for us before we adopted her — that we would not let her medical needs stop us from going places together as a family. We did a Make A Wish trip to Disney World, which she loved.
We’re very open with her about her adoption, and she visits with her birth mother and father and older sister, who come to see her from China. One of the things I love so much about having done an open adoption is that there will never be a question of, “Did they give me up because I was sick? Did they give me up because they didn’t want me?” We will be able to look at her and say, with certainty, absolutely not. They sacrificed everything to give you life. They knew that if you stayed in China, you would die. They could have done that, but they chose not to. They did it because they love you.
I don’t know how much she understands who they are right now. She calls us mommy and daddy and calls them Chinese names for mother and father. She lights up when she sees them, like she does when she sees her grandparents, aunts and uncles. Abby recognizes they are a part of her family.
It is hard. I will be honest. It is very, very hard. It has been very isolating, because people do not understand what it’s like to have a medically fragile child who is also physically fragile. We don’t really know what her future looks like. Research on MMA started maybe 25 years ago, which might sound like a lot but it’s really nothing. Dave and I realize that if she lives into adulthood, she may have to stay with us. Right now, we are taking it year by year. There is no hard and fast science that can tell us what will happen. We do know we may outlive her. And that is OK. We are just trying to give her the best life she can have right now.
Abby makes me want to be more like her. She fights every day to live. Even after the transplant, she still gets blood work once a week, and she is brave and joyful. She does not let her inability to do certain things get in her way. I don’t know how else to describe her. She is just a joyful, joyful kid.
Quotes have been edited and condensed for clarity.