What It's Like to Raise a Child Doctors Predicted Would Die

Jaxon Buell and Angela Morales were born with severe brain defects, but their moms say their "miracle babies" have a high quality of life.

21 March, 2018
What It's Like to Raise a Child Doctors Predicted Would Die

"Miracle babies" Jaxon Buell and Angela Morales were expected to die at birth due to rare and severe brain defects. Now, however, they are among the most famous (and cutest) babies on the Internet. ​Angela, who was diagnosed with anencephaly, was born without most of her brain or skull. According to the CDC, 1 in 4,859 babies born each year suffer from anencephaly and "almost all" die shortly after birth. Jaxon, who is missing most of his skull, was at first thought to have the same defect as Angela. Doctors in Boston later diagnosed him with ​microhydranencephaly, a slightly different brain disorder. In both cases, doctors predicted the babies would die shortly after birth and recommended abortions, according to their parents.

Both babies have survived and continue to defy the odds, however. The Internet just melted over a video of Jaxon, who recently celebrated his first birthday. Angela turned 1 in March. Their mothers, Brittany Buell and Sonia Morales, are now at the center of a community of parents of children with rare disorders and continue to champion for awareness about babies born with severe brain defects. They recently spoke to Cosmopolitan.com about the realities of raising children with a severe defect and the importance of building a community with parents who can relate.

Tell me about the moment you learned about the diagnosis.Buell: We found out when I was 17 weeks pregnant that something was wrong with the pregnancy. The X-ray technician noticed that [our baby's] head was extremely small. They were concerned about his growth altogether because he was measuring about four weeks behind, so that alarmed them. We went through a series of diagnoses from spina bifada to Dandy-Walker syndrome to Joubert syndrome to numerous things, and it turned out that we ended up talking to a doctor — I was about 23 weeks pregnant — and then they gave us the option: They said that in the state of Florida, you have until you're 24 weeks pregnant to terminate the pregnancy, and we were not OK doing that knowing that there was a chance something wasn't wrong because the doctors were never 100 percent sure. So we had Jaxon when I was about 37 weeks pregnant, and his head was extremely small, and it still is smaller than the average child's head. We've been in and out of doctors [offices], we have numerous visits monthly, and he's actually doing very well. He's hitting milestones, he's learning how to talk, he's learning how to sit on his own, which they said was impossible because of the way his brain is formed. Pretty much everything the doctors told us he could not do, he's doing. Except for walking, of course, he's still learning how to do that, but he's learning how to crawl. He is learning everything — it's just at Jaxon's rate.

Morales: I was 16 weeks pregnant when the doctors told us that Angela had anencephaly. The first reaction for me was devastating because we were waiting for [another baby] — Angela is our second daughter. So the first suggestion is, "Oh, you can have an abortion right now." She was very alive to me because she was already kicking and moving. And they said, "No, this is incompatible with life, she's only alive because she's attached to you, but if you deliver her, she's going to die, so the only thing we can offer you is an abortion." They didn't say "abortion" — they mentioned termination or ending the pregnancy, and for them, it was the right thing to do. I really loved Angela before the diagnosis, so my love didn't change when I got her diagnosis. For my husband and I, we said, "You know, we're just going to carry her, and if she's going to die, let her die on her own, and it's going to be her natural death." 

Angela was born in March 2014, and they confirmed she had an opening on the back of her head, but they said, "No, there is nothing we can do for Angela because she's not going to live." So when she was 6 days old, I was able to bring her home with hospice care. We started treating her, we started doing dressings, because the opening was having some leakage and the spinal fluid was coming out. We were taking care of her until she was already 4 weeks old. That's when we found another doctor and he told us, "Yes, we can do a surgery." So at 2 months old, she got a surgery to close the skull, and they even prepared us and said, "The baby might not make it through the surgery, but we will do our best to help her." Since then, she has been proving them wrong. She doesn't have a G-tube, she eats everything by mouth, she rolls on her side, she coos, she recognizes our voice, she loves the beach. She's a happy baby.

Do you worry about the quality of life that Jaxon and Angela can have?Buell: No, I don't actually. His quality of life is like any normal child: He coos, he talks to us, he says "Momma," he says "Dada," he plays with toys, he loves noise, he loves watching TV. He loves sitting in our laps to read — he could be upset over whatever it is he's upset about and screaming at the top of his lungs, but if I start reading to him, chances are 99 percent of the time he's going to calm down. Loud music, he really loves that. He eats with a G-tube, but he does eat, he's not starving, he's not in pain, and he's not suffering. 

Morales: I also believe that disability doesn't prevent people from living life. We don't know how long [Angela has to live], but in those months that she lives with us, she's going to live with the best quality of life that she deserves.

What are doctors saying now about life expectancy and health now?Buell: For Jaxon, at first the doctors were pretty much telling us that he wouldn't make it two weeks, and then he wouldn't make it two months. We've gotten to the point where every time we go to the doctor, they're astonished, they're fascinated, and they just love his story. Literally the words out of his doctor's mouth are, "Jaxon is Jaxon, and he's writing his own book at this point." 

Morales: Angela's doctors have stopped telling me what things she's going to be able to do because so far, she has beaten all the odds. So for now, we don't have a life expectancy for her. Even the doctors told us that they are learning a lot from Angela, so that in the future, they will know how to take care of children like this, if ever there's another one.

What have the biggest challenges been with raising them?Buell: I think the biggest challenges that my husband and I have faced are getting the doctors to be on the same level as we are because we see Jaxon 100 percent of the time, so we know that he can do certain things, and getting them to understand that and having them believe us takes a lot. There are a lot of times that we go to the doctor for answers for small things and sometimes we leave without answers because Jaxon is so rare, just like Angela, that it's just difficult for them and they don't know what to do sometimes. 

Morales: For us, the big challenge is just talking with the doctors because her diagnosis for them is that it's incompatible with life. They hesitate to do more testing and more exams on her. So far we have changed many doctors, and the ones that are seeing her right now are very passionate and very compassionate, and they're just trying to find different treatments for her.

Can you tell me what you've learned by connecting with other families and why that's important to you?Buell: One of the most important things that we've learned throughout this entire experience is that we are not alone. For instance, when we left Boston Children's Hospital [where they received a diagnosis modified from anencephaly to microhydranencephaly], about two weeks later after Boston.com and The Globe did a story about Jaxon, they were getting contacted by so many families informing them, "Hey, my child has microhydranencephaly," or, "My child has anencephaly, and they're doing just as well as Jaxon and Angela."

Morales: So far I know five mothers who chose life and we just kept sharing Angela's story because we think it's the encouragement that they need. What I always tell those mothers who said they have a baby with the same condition is that the miracles can happen every day, and Angela is proof of that, but whatever happens, God is going to give you the grace and the strength to face everything ahead. It doesn't matter if the baby lives one minute or two minutes. Those minutes that you live with the baby, you're going to treasure those moments forever because you held this baby, you kissed this baby, and you were able to love unconditionally. 

Buell: I feel like one of the main reasons that Jaxon, Angela, and all the other children like them are put on earth is to help the medical world now so that it's smarter tomorrow than it is today.

I know that Angela has an older sister. How old is she? And what types of conversations have you had as a family?Morales: She's 6 years old. My daughter, Elizabeth, she knows about Angela's condition because we told her that the baby has a boo-boo on her head and that she was not going to stay with us and that she was going directly to heaven after she was born because her head was not complete. She was 3.5 years old when I got pregnant. She was always saying, "Mommy, it's going to be OK. If Angela has to go, she's going to be just fine." Of course she didn't understand that, but what she was saying was that God had given her the wisdom. Now she knows that her sister is different, but she loves her as she is. 

I imagine the medical bills really add up. How do you manage financially?Buell: Insurance does help us a lot, it's Medicaid. But for instance, we've had to go out of state for a lot of his treatment and his insurance does not pay out of state. His insurance also doesn't pay for certain medical equipment and therapy items that we have to pay out of pocket for. So our GoFundMe helps with that, and it also helps with my salary that I lost in order to stay home and fully take care of him 24/7. I don't have a specific number for you, but I remembered getting a bill in the mail from New York when we went there on emergency visit — it was a couple hundred dollars. And that was only for an hour visit. So we get random bills that we feel should be paid for by the insurance and the insurance feels otherwise. 

Morales: For us, we've been getting support from our family. We have friends who support us emotionally. I had to return to work because I can't afford to stay at home. Angela is getting services from the state at home. She's going to start this week because before my mother was taking care of her. I opened a fund also. But I'm working and I have been working. Gifts can feel like they can be a burden. It can be hard sometimes.

What sorts of sacrifices has your family had to make in this journey?Buell:  I'll start with my husband. He sacrifices by going to work for us during the week. And it really plays a toll on him mentally and physically because mentally he wants to be home with us. He sees that I'm struggling sometimes. For me, the struggles are when Jaxon decides to be awake 24/7 and I can only live on an hour of sleep for so long before you're like a walking zombie and nothing gets done. 

I do have a nurse that helps me three days a week for six hours. It's really hard to take Jaxon anywhere — for instance, going to the grocery store is a chore. Not only do I have to carry all of his equipment with me, his diaper bag is massive, his stroller is massive, his medical equipment is not easy to carry around by yourself, but little noises that wouldn't bother a normal human being trigger startle seizures for him. I can't put his car seat in a shopping cart like a normal mother would do with her baby because it's too bouncy and it's uncomfortable for him. When you pull a shopping cart out, and the other shopping carts slam, that will trigger a startle seizure as well. If somebody speaks too loudly or another child screams, it will trigger a startle seizure. It is a symptom that he has because of the brain malformation, his neurons misfire, and he just has that reflex that you and I wouldn't have.

Have you had to readjust your expectations or your futures in some way?Buell: My largest sacrifice was I was going to dental school. I continued going to school throughout my pregnancy as well as working. So when I had Jaxon and we discovered he was going to have all these issues and he needed extra care, I not only quit working so that it hurt us on the financial aspect, but I also quit school. My plans before Jaxon were to finish school so I could become a hygienist. I plan on starting that back, but that probably won't be for a while, until Jaxon is able to go to school, which I think he will be 3 or 4 at that point. 

You've received a lot of positive support from the Internet, but the Internet can be a really nasty place as well. Have you received any backlash, and if so, how did you deal with that? Morales: Yes, it is hard to ignore the horrible things that we have been told. I wrote a post about people who have been sending us messages saying we are selfish, saying, "Let her die," "Why prolong her life in her condition? She's a vegetable." We are selfish for keeping her alive? We are not keeping her alive. It's God keeping her alive. Yes, she has a disability. She's terminal. She's not an animal that we can afford to put her down. She's not a toy that when it's broken, you throw that toy away. She's a human being and deserves the same treatment and care like any other human with terminal illness. People can talk whatever they want. I don't hate it. I just pray for them. Pray that one day that they realize that these children [have lives that] are worth living.

Buell: Ninety-nine percent of the people that respond to our lives are positive. But we have that 1 percent that feel the need to backlash us or give us a nasty comment, and to be completely honest, we try not to give them any credit. We honestly respond to every single positive comment that we could possible get to in a 24-hour period. If we see something negative, we try to just ignore it because, honestly, emotionally it doesn't affect us because we know what we're doing. 

Did you struggle at all with the idea of talking to the press and going on the Internet and sharing your children's story in such a transparent way?Buell: ​At first, we really didn't try to make it a public thing for news and media. It started off just sharing our story on Facebook, and my husband's coworker actually made the Facebook page. This whole year of [Jaxon's] life, we were putting things out there on Facebook, but when he turned a year old, the Boston Globe did the story and that's when the media went crazy. We were a little hesitant at first because it's new to us. But everybody that comes to us out of the media, they're so positive and they want to share our story the way we want to share it. So we really don't have any reservations with that.

Morales: When I was pregnant, I found many support groups and I found that they were sharing their babies' stories. I also want to share our story. It doesn't mean that because my baby has a fatal defect, I will be ashamed of my baby. We were prepared for her funeral. We didn't know that Angela was going to live this long. When I started sharing her story, the news outlets started writing about Angela, and I found that as an opportunity just to show how precious life is. 

Have doctors talked to you about what might happen if Jaxon or Angela reaches school age?Buell: They haven't really mentioned that because the doctors, as great as they are, they try to be positive but they also tell us the reality. I don't think they honestly feel he's going to make it to school age. My husband and I do. I think we're gonna cross that bridge when we get there. But there are some specialty schools right down the road from us that are 100 percent special needs-based. So if he gets to that age and he is able to go to school, he will probably go to one of those schools.

Morales: There is not a plan because they still think she's terminal. We know that we are realistic that her condition is very tough and we don't know if she's going to be here with us on her 2-year birthday. We don't know if she's going to live to go to school. We're just enjoying today because tomorrow is not promised. What I can tell you is that every single minute that she is living is a miracle and we are so thankful to God for giving us this miracle of life.

This article is a compilation of four phone conversations. The first two were joint interviews with Buell and Morales. Then the women were interviewed separately due to scheduling conflicts — Angela was in the hospital for seizures during her mother's third conversation with Cosmopolitan.com. This interview has been edited and condensed.

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Credit: Cosmopolitan
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