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Trusting God Through an Adverse Diagnosis in Pregnancy

Air Date 01/25/2017

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Brandon and Brittany Buell offer hope to expectant and new parents of disabled children as they share their moving story of raising their toddler son, Jaxon, who was born with part of his skull and most of his brain missing as a result of a rare medical condition.

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Episode Transcript

Opening:

Teaser:

Mr. Brandon Buell: For me, it was completely disbelief, because just hour before we got the news we were having a boy, which we selfishly wanted, and then the very next morning it feels like the entire world is crashing down around us because now that boy that we truly did want, he may not make it at all.

End of Teaser

John Fuller: Well, that's Brandon Buell, and he and his wife, Brittany, are with us today on "Focus on the Family," with Focus president and author Jim Daly. Thanks for joining us. I'm John Fuller.

Jim Daly: John, life is a precious gift, and in fact we are told in Genesis 1:27 that God created man and woman in His own image, and that should encourage each one of us right? We are made in the image of God, and it doesn't get any more precious than that. Here at Focus on the Family we believe all people are of infinite value, regardless of age, their developmental stages, appearance or ability. We're made in the image of God.

This is one of the foundational values that we hold on to, and that's why we're going to share the story of a remarkable little boy with you today, a little boy who wasn't expected to live. He was diagnosed with so many problems that the doctors thought he should be aborted, but his parents, God bless 'em, decided to trust God rather than man with their child instead.

This will be a great reminder to all of us about why a child's life does matter, and even if he or she didn't turn out the way that we expected or according to our plan, perhaps with some physical or mental challenges, whatever it might be, you might be living in that place. This program is not just for you, but for all of us to know that God cares for us.

John: And Brandon and Brittany are the parents of Jackson. He's known as Jaxon Strong because he's such a survivor and perseverer. He is a 2-year-old with a remarkable story, and you might hear him as we're conversing. He's in Brittany's lap right now. This family has been featured on national news. They have a foundation that supports neurological research, and the story is captured in the book Don't Blink: What the Little Boy Nobody Expected to Live is Teaching the World About Life.

Body:

Jim: There you have it. And you can hear little Jaxon in the background, but Brandon and Brittany, welcome to Focus on the Family.

Brandon Buell: Thank you.

Brittany Buell: Thank you.

Jim: Let's start before we get to Jaxon's situation. You're a young couple. Tell us a bit of background about yourselves. How did you meet, how many years ago was it? Your love story, I want to hear about that, because, man, it must be good because you're committed to each other, and a lot of couples, when this kind of adversity hits them, they wobble, so I want to build that foundation first about you and each other.

Brandon: Absolutely and Brittany's laughing because truly and honestly we actually met through MySpace back when MySpace was kind of the frontrunner before Facebook.

John: You met in MySpace. (Laughter)

Jim: Technology changes all the time, doesn't it?

Brandon: It's true, and we mention that in the book as well. But she had just moved down from North Carolina to Florida, and she was looking for a church and she found my profile, saw that I was gonna a Baptist church at the time there in Saint Augustine, Florida, where I was living. So we were trying to just be friends and church buddies. She wanted to know the area, but we met, and that first night we kind of knew the friend thing may not work out, that there was something else there.

Jim: There was already that chemistry.

Brandon: There was already a chemistry there. And so, she was getting to know the area, getting to know the church, we got to know each other. Six months later, we were engaged and less than a year after that we were married on May 1, 2011.

Jim: And you moved to Florida. You remained living in Florida, and what were your plans and dreams? What did you think life would look like?

Brittany: I don't know. Did we even [know]? (Laughter)

Brandon: I mean the standard [ideas], where we were gonna work. We wanted to start a family when it was the appropriate time. We actually had a hard time doing that, and we didn't know if we were gonna be able to have a kid at all.

Jim: Really? Were there some difficulties?

Brandon: There were.

Brittany: I was told that I couldn't have children by a couple of different doctors for a couple of different reasons, so even though we were trying for two years, we ended up just kind of giving up on trying and then that's where Jaxon came in.

Jim: Right. Wow. Let's talk about it. So you stopped trying to have kids, and then bingo, the Lord said, "Okay, you're pregnant."

Brittany: Pretty much.

Jim: What was that like, and how did you feel? What was having dinner that night when you got the news like?

Brittany: I didn't really believe it at first, because all these years I've been told it's not gonna happen, so when I got the positive pregnancy test, it kind of shocked me and I was kind of, I don't know, I was caught off guard 'cause I had just started finishing my dental degree. So in two months I was gonna go to school for that, and I'm like, all right, well, it wasn't my timing, obviously, so God had other plans. So it was like a rollercoaster. I was happy, I was sad. I was scared at the same time, but mostly happy and excited.

Jim: Sure, how were you feeling, Brandon?

Brandon: I'm the analytical one, so to me it was the worst timing ever. We had just moved into a new home. We were trying to get started with that, and then there's the phone call. Actually it was through a text message that I found out that we were even pregnant, by the way.

Jim: Well, she knows your analytical mind, so she's communicating in your love language.

Brandon: I'm at work and I get a text message, and it kind of changed my whole day.

Jim: Wow!

Brandon: But for me, I just [thought], like the timing is terrible. This is not good. We don't have any money set aside. We are not ready. But I've been told many times when I tell that story everyone's like, "You're never gonna be truly ready to start that family. Just dive in. It'll work out."

Jim: A very normal response.

Brandon: Good. I'm glad to know that. And it certainly has worked out just fine.

Jim: Yeah and so then you began to progress through your pregnancy, Brittany. What was the first sign that you felt maybe something wasn't quite right? Or did you move through the first trimester, second trimester pretty easily?

Brittany: We were actually still in the first trimester when we found out. Our first ultrasound was done really early because I was inpatient and I had it done like eight weeks. And then our second one, we went in to find out if we were having a boy or girl, we were 17 weeks pregnant. [We] found out Jaxon was a boy, and the way the technician was acting was sort of off. She was really quiet. She wasn't saying much. And she spent a lot of time on his head when we were going through the ultrasound.

And so, the first one they just kind of let us go. They were like, "Have a great day. We'll see you in however many weeks." But this one she's like, "I need to go talk to the radiologist first and see if you guys can leave."

Jim: Wow, that must have been unsettling.

Brittany: And the second she left the room, I was like something's wrong. That's not normal.

Jim: Were you together?

Brittany: We were. He was there with me.

Jim: And so, how long before the doctor came in the room or called you on the phone? What happened?

Brittany: Well, they actually sent us home that day. They were like, "Congratulations, you're having a boy." And I still felt that something was wrong on my way to work the next day. It was a Friday. I got the phone call literally while I was driving down the street, and they were like, "We think Jaxon has spina bifida," so that started the first of many diagnoses that were misdiagnosed, but that's the first call that we got.

Jim: Right, so that was what they said first of all. How did that hit both of you? I mean what did you feel, even with the misdiagnosis? You knew Jaxon wasn't gonna be, you know, completely healthy. How did you process that?

Brandon: For me, it was completely disbelief, because just hours before we got the news we were having a boy, which we selfishly wanted. And then the very next morning it feels like the entire world is crashing down around us because now that boy that we truly did want, he may not make it at all.And we didn't believe it, and of course I moved into the denial; then of course, into the anger, but just realizing that, you know, this is what God has given us, and so no matter what, we're gonna go forward and we're gonna see what He has in store for us.

Jim: Wow. And when did the doctors begin to suggest that maybe an abortion would be the best course of action?

Brittany: Well, they never used the word "abortion." They used the word "termination," but same difference in my mind.

Jim: Sure.

Brittany: Well, we found out when I was 17 weeks, and for us, we at the time didn't know it was a misdiagnosis; we were 100 percent certain the doctors were right, because that's all we knew.

Jim: Right, think of that.

Brittany: So we went along, and after that the following weeks we went twice a week to a specialty doctor, a neonatologist, and we had two ultrasounds a week and that's when we had genetic counseling, genetic testing, amniocentesis, and that's' when the spiral of different diagnoses came. And I believe we were 25 weeks?

Brandon: Twenty-three weeks.

Brittany: Twenty-three weeks when we found out they were starting to suggest the termination.

Jim: Right.

Brittany: But in the state of Florida, we only had another week before twenty-four weeks for medical reasons was the cut-off limit.

Jim: So 24 weeks was it legally, right.

Brittany: And we denied it. We didn't want to. We told them numerous times we didn't want to do it.

Jim: Let me ask you about that, because I found that intriguing in your story, the courage that you had as a young couple again. I mean you're in the doctor's office; he's the expert (he or she) and they're telling you, "This is our professional recommendation. We think you need to terminate," which is abort. And you stood your ground. That took a lot of courage.

Brittany: We didn't feel like it was our decision to make.

Brandon: That's absolutely true, and with our Christian beliefs, we just never wanted to go down that road, and when you get that news, it's shell-shocking, as you can imagine, and we first asked, because we didn't know what else to say, what to ask, and it was, "Is Brittany okay? Is she in any danger? What about Jaxon? And is he feeling any pain right now?" And the answers to all of them were "no," but even if one of them had been "yes," we would have moved that conversations into, "Okay, what do we do? How do we, you know, save Brittany's life? How do we try and save our son's life? Even if you're saying it's not possible, we want to exhaust all options."

And we've always done that. Even after Jaxon was born and there were difficulties in the hospital, we've always had that mind-set. And so, we did stand our ground simply because we didn't feel that was the right place to go. We did not feel that was the right decision to make. We felt he had a chance at life, God gave us this child, and it wasn't gonna be our decision. If he was gonna pass away, if he's ever gonna pass away, it's not our decision. It's not our timing. It's not our choice to make, and we chose that from the very beginning. We went strong, and they actually even scheduled the abortion anyway.

Brittany: They called me—

Brandon: Even though we told them no, they still scheduled it. And we never went, and we never went that path.

Brittany: --they called me numerous days in a row while I was at work just to reiterate what they were saying, to go over the genetic testing again. They kept getting different lab results back and she kept suggesting that, that's probably what we should do. And I told her, I was like, "It's not our decision and we're not going through with it. If God doesn't want Jaxon to live, then it's gonna be His decision, not mine. I couldn't live with that."

Jim: How did she respond to that statement?

Brittany: I feel like she respectfully took it, but--

Jim: Okay.

Brittany: --in the same sense, she also called me or sent me an e-mail about a week later and said, "Just so you know"--well, not a week later, just a couple of days later--"Just so you know, we went ahead and scheduled in case you change your mind, because you only have a week to do it."

Jim: Okay.

John: What a story of courage. Brandon and Brittany Buell are our guests today. From time to time you might hear Jaxon, their son, as he's in Brittany's lap right now. He's 2-years-old and you can find out about his story in the book that they've written, Don't Blink. We've got copies at http://focusonthefamily.com/radio.

Jim: All right, so you move through this period of time in your pregnancy. You have committed Jaxon to the Lord is what I'm hearing, and it's gonna be the Lord's decision. Again, very brave, very courageous and admirable. So God bless you guys for that.

Brittany: Thank you.

Jim: Then the day comes, Jaxon is born, and what happened?

Brittany: Jaxon was born on August 27, 2014, and we knew it was gonna happen because it was scheduled. I guess they assumed that the extra three weeks in the womb wasn't really gonna help him much; that's what they thought. So they induced me, and Jaxon was born and it was really blurry for me, but the only thing I remember is Brandon coming to my shoulder and warning me about how small his head was, because throughout the pregnancy we knew he was behind in growth, he was about four weeks behind in growth when he was born. He was only four pounds, and his head was extremely small and very flat on top.

So Brandon came to my shoulder and he was just reminding me, "Now I want you to know his head is very small," and no amount of warning could prepare either one of us for how small he really was, but he was healthy, he was breathing on his own and didn't really need medical attention immediately, so that was very, what is the word I'm looking for?

Brandon: It was encouraging.

Brittany: That word.

Brandon: (Chuckling) It was encouraging, because when they then took him to the NICU, and he spent almost a month in the NICU just after being born, they had him hooked up to every machine, every tube and every connection you could think of because they thought he would need it. And slowly, one by one, they started turning machines off, and because the best reason was they realized he doesn't need these things.

And virtually from the head down he's perfect. He's got a strong heart, he has strong lungs, when he cries, you can hear that for sure, and even with his neurological condition, he has about the fifth the size of the brain as he should. He's missing 80 percent. So that's why they never thought he would really make it. We had a doctor tell us he wouldn't be here when he was 2, and he is.

Jim: In fact, you invited that doctor to his second birthday.

Brandon: We did.

Jim: I thought that was brilliant.

Brandon: They didn't show up, but we thought it was the appropriate response.

Jim: And they're doing, to be fair to the professional community, the medical community, they're … they're doing all they can do. Now of course as Christians we all believe in life, but that's what makes that such a wonderful testimony, that you as a young couple, I'm just putting myself in the place of that doctor, being taught wisdom from a young couple. You know, we're gonna trust God, and now every time they're saying he's not gonna make it; Jaxon's not gonna make it, boom, he makes his first birthday, he makes his second birthday.

Brittany: We actually stopped hearing that recently. They don't give us an age limit or anything anymore. They say Jaxon is writing his own book, and they are starting to believe us, I guess, that he's not going anywhere.

John: I'm still stuck in the delivery process. They bring out this baby who has this quite misshapen head. And I'm sure that it's a shock to everybody in the room, 'cause that was not necessarily expected. But I'm just struck by your decision to say, "This is our son. We're gonna love him." I mean there is a disconnect between your expectations and what actually happens in that room, in that moment. Where did that embrace of love say, "Yeah, this is our son and we're gonna keep him"?

At that point, I would say by my third trimester, we weren't listening anymore. I mean we were respectfully taking doctors' advice, but as far as Jaxon was gonna be, we were 100 percent ready to expect—

Jim: You'd already accepted it.

Brittany: --anything before he was even born. So we knew we were gonna have a child who was gonna have some sort of special need and or some disability, so we expected it. We didn't know what to expect 100 percent, but we already knew it was gonna be a different situation, so we prepared ourselves for it, and we weren't really that shocked on that day 'cause he was better than we anticipated.

Jim: Yeah,in fact, in the book you tell a story that caught my attention where the doctor came into the hospital room to tell you that your little boy is never gonna see, never gonna hear, never going to speak, and somethin' happened. What happened?

Brandon: That was just day two—

Jim: Day two.

Brandon: --and everything was still so raw. I mean we were crying all the time because we were loving him, joy that he was there, but listening to the doctor enough to say, "Well, maybe this is the last day we have him." So we were just tryin' to embrace him and love on him. He came in and showed us results from his MRI compared to that of a typically developing child, and as you can imagine, the MRI results were much different, and he compared those and then went on to tell us that Jaxon will probably never see. He'll probably never hear. He'll probably never walk. He'll probably never talk. He'll probably never communicate effectively. He'll probably never even know when he's hungry.

And just after he made that statement, I believe it was he put his laptop down onto a metal tray in that—

Brittany: I don't think the tray was locked.

Brandon: --very cold, very cold stale hospital room, and that metal tray slammed down. And I'm actually kangarooing chest to chest with Jaxson at that time, and he jumps in my arms at the sound. And every single person in the room, including the doctor just have this amazed, startled look on their faces, saying, "That was obvious he startled to that, which means he obviously heard it."

Jim Right.

Brandon: And the response from the doctor was to simply walk out of the room.

Jim: Didn't say anything.

Brandon: Didn't say a word.

Jim: That's amazing.

Brandon: We've never even heard from that doctor again, never saw that doctor again.

Jim: Is that right?

Brandon: It's true. It's true.

Jim: I mean what a moment, to be told in one second that he'll never hear.

Brandon: And that's one reason that we've never given up hope, because on day two Jaxon was defined to us on day two, so why would we not believe in the strength that is in him? Why not believe in something else? And just to get back to the other point real quick, for me, I put myself in my son's shoes. People told me not to do this, but this is my son. And he may be young, he may be different with how he communicates, but what does he want? He wants his parents to love on him, regardless. He deserves the best, and no matter what we go through, I think about that. And my son deserves the best from me, so I want to make sure I strive every day to do that.

Jim: Man, that is character. I've got to ask you. Of course you're dealing with this. You mentioned crying so much in the beginning with all of the unknown, the pain of it. How did you two stay emotionally, spiritually connected with so much turbulence around you?

Brandon: We have always tried to keep Christ and God-centered in our lives. And actually something we mention in the book, my brother-in-law has always worked in the church, and we were in the middle of that NICU stage. Jaxon wasn't a month old yet. We walked him out. They came to visit us at the hospital and we walked him out of the parking garage, got out of the room for a minute just for a breath of fresh air.

And he pulled me aside and he said, "I just want you to know that I've seen situations like this before where you are praying so earnestly that the child makes it and you're so focused on the child that you forget your own marriage, and that if it doesn't turn out the way we all want it to turn out, that don't lose the marriage at the same time. I've seen it happen."

And those words are in the book, but those words were so paramount to me; I've never once forgotten them. They've stuck with me. I still remember that moment in time, and we talk about that all the time, that let's make sure no matter what happens, no matter what our day looks like, no matter how long we're blessed to have Jaxon, let's be sure we're focused on our entire family, and we've always tried to do that.

Jim: The idea of heaven, you know, of course Heaven is for Real was a movie; first it was a book. A friend of mine was the literary agent on that whole thing, Rick Christian.

Brittany: That book is awesome.

Brandon: It's fantastic.

Jim: And I'm just sitting here thinking of you guys, thinking of the story there of the little boy. If you don't know the story, you can certainly get the book. But this little boy has an experience of heaven. And it's so beautiful because he comes back and reveals things to his mom and dad that they've never shared with anybody, which confirms something happened.

But part of that he talks about being in heaven and seeing his sister, and they'd never talked about that miscarriage, and that she was running in heaven. How does that, when you hear a story like that from a little boy, Colton, how does that make you feel about Jaxon's future, whether he's with you next year or not, that he will be with Jesus?

Brandon: We believe strongly, and we talk about this as well, that we know that one day we will see Jaxon again. We will see all of our loved ones again in a place that we can't even fathom, that will be so miraculous, so beautiful. And we know that Jaxon will be in his perfect form, as we all will, and we look forward to that day, and we know he'll recognize us. And we even speak in the book about he may run up to us, say, "Mom and Dad," and embrace us. And just we know that God has us in His hands.

Jim: And what's so good about it is it shows your faith in God. God has to smile with this. There are things that happen in this life that disrupt us. We can't put our faith in Christ into our circumstances. Another way to say that is our circumstances cannot dictate our hope, our faith, our trust, our love in Christ. This life is a short life; maybe for some it's shorter than others; but at the end, we all come to an end, and we move on to the afterlife, right?

And for Christians we believe that's heaven, and that's what matters. And I just think God has to be smiling that you two were willing and able to show even the professional community that, no, we're gonna trust God, not science, because this is beyond science.

Let me talk about your Facebook presence, because that's awesome too what you guys have done with this situation. You have about 400,000 people on Facebook right now following your story with Jaxon.You're raising money for neurological issues in young children. How is that going? What is that like to champion a cause now that is so close to your heart?

Brandon: Well, the foundation is the Jaxon Strong Foundation. We just established that this year, and it's truly dedicated to Jaxon, because the mission of it is for neurological research. It's advocating for individuals who have disabilities, and it's sharing the belief that we have; every life has value and a purpose. I mean that is absolutely Jaxon wrapped up all in that.

So we wanted to make sure we were receiving so much support. You mentioned the online community with Facebook, and we never started [that]. Actually a colleague of mine, a former colleague of mine, started that Facebook page. It was just share Jaxon's story. I didn't think it would do anything; we just were proud of him. We wanted to celebrate his life. And very quickly it turned into what it has today, and we have received [an] overwhelming amount of support. Of course, there's the other side that don't like anything we stand for, but so much more support.

Jim: Yeah, and what's so awesome when this happens is it does change perspective, and that's what I love. In fact, I think there was a story in the book where a gynecologist wrote you on Facebook, I think, and said, quote, "When we come across an ultrasound like yours, we are trained to suggest termination," which you described many doctors told you that. "But because of your son, I will stop doing this."

That is amazing, you guys. I mean there's one professional who's saying, "Okay, the science isn't complete. It's not 100 percent, if they have this diagnosis, then this will be the 100 percent outcome. Because as you said, Jaxon is outliving all the outcomes, and that's trusting God.

Brandon: Absolutely. That's one of our favorite messages we've ever received. It was through Facebook. And we've received thousands, tens of thousands of messages. We try to reply to all of them. We can't, we try. We have talked about that one so many times because that is the perfect example of the difference and the change and the impact mostly that Jaxon is having both on the medical world and both on the spiritual world as well. And sometimes those two can come together in a beautiful way from a little guy like Jaxon, because he is actually changing that. It's amazing.

Jim: And what I love, too, even as you describe the, you know, the darkness that comes at you because you gave Jaxon life, that you manage it with peace. You know, that God's peace is with you. You can feel it; you can see it. You're not frustrated by it; you're not going to war with those people. You pray for them.

Brittany: Right.

Jim: That to me, is the sign of God's heart in you and His fruit in you, and that's beautiful. I just want to say thank you for being with us. This is a special and like a holy moment to see your faith and your son here ooing and gooing. I'm looking at him right now. And we'll put some family pictures up at the Focus on the Family website so we can celebrate with you what God has done.

Brandon: Thank you.

Jim: And pray for his future. You don't know. I mean you still don't know what his future will be and how long he will live, but mom and dad, what a beautiful story you've written here.

Brandon: Thank you.

Brittany: Thank you.

Jim: It's beautiful. Just as a reminder, you know, we believe here at Focus on the Family that human life is created by God in His image. It's where I started; it's where I want to end today. "It is of inestimable worth in significance in all its dimensions, including the preborn child, elderly neighbors, those with cognitive and mental health challenges, those deemed unattractive, those with physical challenges, and every other condition in which humanness is expressed, from the single-cell stage of development to natural death."

That is God's domain. Christians, we are, therefore, called to defend, protect, and value all human life, and you're not gonna hear a better story of doing than what you've just heard, and what a privilege to have you with us. Thank you.

Brandon: Thank you.

Brittany: Thank you very much.

John: And we'll encourage you to do a couple of things. Go to the website and get a copy of the book, Don't Blink, by Brandon and Brittany Buell, and we're gonna post our statement about life. I want you to look at that so that you can be strong in the coming days, thinking about this story and what's going on in the culture and people you might meet. And we want to encourage you to affirm life, and these are two ways you can do that; http://focusonthefamily.com/radiois the starting point. Or call us and we'd be happy to talk with you. Our number is 800, the letter A and the word FAMILY.

We'll also link over to the Jaxon Strong for the Facebook page, so you can follow that and learn more about the story and keep up to date with this wonderful family.

We'll also link over to the Jaxon Strong for the Facebook page, so you can follow that and learn more about the story and keep up to date with this wonderful family.

Jim: Ah, Jaxon Strong, you are, and again, good to have you.

Brandon: Thank you.

Closing:

John: Our program was provided by Focus on the Family, and on behalf of all of us here at Focus, thanks for listening. I'm John Fuller, inviting you back next time as we once again help you and your family thrive.

  • Featured Website

    Buell Family Photos

    Focus on the Family

    View some photos of Jaxon Buell and his parents, Brandon and Brittany.

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    The Sanctity of Human Life Pillar

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    The sanctity of human life is one of the foundational "pillars" of Focus on the Family. 

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Guest

Brandon and Brittany Buell

View Bio

Brandon and Brittany Buell have a son named Jaxon who was born with part of his skull and most of his brain missing as a result of a rare condition called Microhydranencephaly. The Buells were advised to terminate their pregnancy, and warned that if their baby survived outside the womb, he would be deaf, blind and unable to sit up, crawl or communicate. Brandon and Brittany defied the advice they received and chose life for their son. The Buells' experiences have strengthened their faith in God and affirmed their belief in the inherent value of every human life. Their story has been featured in numerous media outlets and documented in their book, Don't Blink. Brandon and Brittany are the founders of the Jaxon Strong Facebook community and the Jaxon Strong Foundation, which advocates for disabled people and raises funds for neurological research.