WHAT IS SPINA BIFIDA? | Answering Your Questions About Our Sons Birth Defect

[@LexieThiery]

Thank you for how much love we’ve already gotten on this video. 💕 you all are absolutely incredible.

[@allieglozier2389]

The part you said about hydrocephalus made me feel so proud and included. I had a VP shunt and as of a year old today I got it taken out (I got an ETV). Happy birthday to my ETV!

[@allisonsadler719]

I have spina bifida if u would like to talk to me I'm allison Sadler Ontario 34

[@alanahorley7500]

I was born with the trifecta 🤣 I’m L5 (I think) 🤔 i was born in the late 80s and my mum and dad had no idea until I was born. In a wheelchair

[@purplepeggy9027]

Lexie Thiery Hi Mommy +Daddy. Oohhhh he's so cute I can't take it. I wanna squeeze him & love him up. Btw, Imo He looks just like him daddy. awwww God Bless your lil family. PRAISE jesus.🛐💜

[@shelbymorimoto371]

Would be curious to know if (given everything) you guys have chosen to or to not vaccinate him?

[@leslypeace8293]

I was born with spina bifida and had surgery at birth. I developed some complications with one of them being tethered cord and I had to get a second surgery at age of 17. I wear a brace on my left foot and most of my damage is on my left side. But I walk just fine and I recently became a mother with no complications and I am a nurse now! He will do great, god does miracles!

[@elainebird58]

GOD...respect his name

[@snejjsndndnnj8499]

Elaine Bird relax lady

[@annsnan]

Elaine Bird wow....relax!

[@jazmin6031]

Aww 🥰

[@Magical3750]

I’m the same way. I got tethered cord and hydrocephalus. I wear afo’s most of the time. Was your baby ok? I want to have biological kids if possible but mostly adopt, but I’ve always wondered.

[@ehaszdawn]

I’ve witnessed God’s miracles after my daughter was hit by a car at 11yrs old. We were told she would never walk, talk, learn, etc. I refused to except that! Here we are almost 11 yrs later and she’s about to graduate college with a BA in education. The disabilities she was left with are minor in comparison to the outcome the doctors were giving. God is good! Your son is absolutely perfect!!

[@ThatsCass]

I lost my only son and only child when he was 3 months old..he was shaken by my partner at the time and i really gave up on faith and beleived god wouldnt allow this to happen if he truly existed..but i came across your videos and watched how he is slowly healing Azariah and that is showing me that god does work miracles..so thank you for sharing your journey..

[@kkfatmonkey24]

I am so sorry for your loss. I will pray for you!

[@autumngrace3135]

Oh my, yes, God is good, and good all of the time!!!

[@ThatsCass]

@@autumngrace3135 im slowly realizing that...

[@Lisa2233]

Oh honey! I'm so sorry for your loss!! ❤

[@tinaschill7104]

Cassandra Heilman I’m so so sorry about you losing your baby. I know this feeling all to well. I lost my first baby boy at 2 months old to sids. I also lost 4 other babies all were boys. They were born to early and didn’t make it. Sending hugs and prayer to you.

[@RealityChick77]

I was born with incomplete SB and am 43 now. The doctors back then said that I would never walk or function. I have lived a “normal” life and just now am having issues. The main issue for me is the nerve damage/pain, but I say all this to applaud your handling of this. Never allow docs to dictate your child’s future. God has already mapped out his path and HE will walk beside azariah through his journey on earth

[@TheCrystalrenee]

Mary Loves Makeup77 I’m the same way and I am 45. Although I have problems with walking and I fall a lot.

[@terriarsenault5345]

Exactly 30 yrs ago I was going through this with my son. He is now a father of 2, owns his own house and business. He has had multiple surgeries and the doctors were always amazed at his resilience. Best wishes to you all.

[@jessicacompton5371]

Don’t tell me our God isn’t a loving, powerful God. Look at this little miracle boy. ♥️

[@carmengonzalez-quevedo1434]

Hi my name is Carmen. I am 40 years old and I also have spina bífida. And also have it at level L4 L5. I used to walk with crutches. As a kid I don’t any longer I am currently in a wheelchair. But in my case I have found I have more freedom to do things now that I couldn’t while I was using my crutches. Your baby is super adorable. My wish for you all and him is for you to continue to fight for him all the way and always listen to him as he grows and push him to be as independent as possible and never let him feel as he can’t do something because of his disability. He may do them differently but he can do anything he sets his mind too. Best wishes.

[@shelliemassey873]

Lexie you did an AMAZING job of explaining Spina Bifida and bringing HEALTHY awareness. As the mom of a 21 year son with Spina Bifida, I love the fact that you are waiting for your son’s personal story to be written. You are 100% correct that each case is totally unique. I love that you point out that folic acid and the type is only one piece of the puzzle, Spina Bifida is truly multifactorial. My prenatal testing did not catch our sons Spina Bifida and I must say it was quite the crash course at birth! Lol. I have followed you since your diagnosis but always remained silent BECAUSE each child is unique and I remember wanting just one answer I could count on for sure....there isn’t one, each child is a miracle. Congrats on your gorgeous baby boy, he is truly blessed to have such incredible parents and you are incredibly blessed to have him! May you enjoy this journey!

[@jessiejenkin3461]

My partner has Spina Bifida he’s 23 and he is the most loving kind hearted person you will ever meet he’s strong and never complains despite being in pain a lot of the time.

[@Proverbs31Couponing]

My son has Congenital Hydrocephalus, and it was found during my 18 week anatomy scan of my pregnancy. He is almost 4, and he’s had 5 brain surgeries. He relies on a shunt to keep him alive. It’s a hard reality, and I pray that you never have to experience that. Having a special needs child is such a journey, and it has definitely increased my faith and trust in The Lord. Thank you for sharing your story, and your faith in this journey. You’re amazing parents and advocating for your child and his conditions is so important, and needed.

[@glorymua6611]

My mom had no other choice, but to wait in till after birth due to the fact she found out I had Spina bifida 2 days before I was born. Every doctor I see tells me I’m a miracle, and is so shocked that I’ve made it this far. Yes I have medical procedures I have to do like cathing and flushing. But they are really shocked on my muscle mass, and now I’m gonna have a baby, so they are even more surprised. Having Spina Bifida isn’t easy at times, but you just gotta be determined and have a good support system and really good doctors ❤️

[@jocelynpena7801]

Hey girl I have spina bifida and I would love to talk I live in California not many ppl here to connect with that have it

[@samiehalenda9436]

I haven’t watched the video yet. But I just want to say something to you. Your the most amazing mother to Azariah. He’s one of the luckiest kids to have you as a mom. I love how your a Christian and just show the love. You may have your good days and bad days but I just see the love you have for your child. I know this was a hard journey and I can’t imagine being in this position, but you really are a warrior and Azariah. I am so happy you have a husband too who sticks with you through this time. He is such a good daddy too! I watch all your videos, and it just brings a smile to my face seeing such a mother’s love to their child. Azariah is such a victory from God! Amen 🙏❤️

[@christinagonzalez1129]

You explained everything perfectly!!! I have SB Myelomeningocele. And everything you said was correct!! I have the most severe case of SB. I am 28 years old. I had surgery when I was 2 days old. I have had leg braces since I was 2 years old. I learned to walk when I was 1 1/2 years old. I have a shunt because of hydrocephalus I’ve had it since I was 1 month old. I have graduated college and have a full time job. I have used a walker, wheelchair and scooter all throughout life to get me to and from places but I never have let it stop me from walking even when I get tired from walking long distances. I have never let Spina Bifida hold me back from reaching my goals. And I have seen just how much god has had his hands on me and my life the last 28 years. My family and I are very blessed. I can see just how blessed you and your family & Azariah are blessed too! God is so great! God bless you all! 🙏🏼💜🙌🏼😃

[@melissacary6884]

Have you considered being an informational speaker for families expecting a child with SB? I think you could be a source of peace for a lot of families!

[@autumngrace3135]

Most definitely she should!!!

[@katiegodinho2275]

Evidence of a miracle working God is all over this story. Love it.

[@nicoleb1023]

Every video about your journey with him has brought me to tears. Currently 22 weeks pregnant with my 3rd baby and found your channel a few months ago. I had recently started bible studying and dipping back into Christianity as well and every video just keeps pushing me with the sense that it's a good direction. Your kiddo is so blessed to have you guys as parents. Beautiful job!!

[@FancyPants_RN]

Lexie....I have been a RN for 20 years and am impressed how well you did at explaining everything. Great job, momma!! You are well informed and can tell that you are a great caregiver and advocate for your baby. He is such a precious little guy....and I am so glad to hear that you guys chose LIFE for him. 💗 We have a chronically ill child and I encourage you to find your tribe....other families that understand your life because many of your friends will love you still, but they just can't relate. They care....but they can't empathize. Also....ASK FOR HELP AND TAKE IT! You need to do that to survive the long haul. God made us to live in community....not alone.

[@FrannRants64539]

I have L4/L5, no shunt and I have chiari 2 malformation, I walk with braces and I do just fine. I hope he has a great life ❤️

[@snakebitepellehue]

Same. I have L4/L5, shunt, neurogenic bladder,bowels and type 2 Chiari malformation. I walk with crutches, though.

[@CarleyPartyof6]

I cant imagine how difficult this whole experience must have been for you guys... I cant help but think that with everything going on regarding the legality of abortion today you two were chosen to carry this baby and share your story to give a voice to unborn children. Its such a powerful story. I pray for you guys every day. You are doing such an amazing job.

[@jg1027]

My jaw dropped to the floor when you said that the FIRST option they give is termination for SB. Baffling! I am so glad that wasn’t your route for little man. ❤️

[@shelbymorimoto371]

J G right?? It’s not even close to a terminal diagnosis so anything non terminal I can’t even believe they push that option onto people!!! Horrible

[@tabithawallen7716]

They give termination as an option for cleft lip and palates. Way too many parents don’t want ‘sick’ or disabled kids and choose that option every day. My younger sis has SB and my husband and I have a 75% chance of our kids having it due to our genetics. Our 20w scan is Friday and my doc is nervous but we aren’t.

[@jg1027]

Tabitha Wallen Hugs ❤️ sending you guys prayers.

[@gracewillis577]

I got offered a termination because one of my twins had enlarged ventricles at 16 weeks and a single umbilical artery to his cord by 24 the ventricles were totally back to normal and his cord hasnt affected his growth ... craziness

[@MamiFilipinaa]

Mrs Moto it might not be terminal but there are people in the world who don’t want to bring children into the world knowing they could face a lot of hardship and pain due to having Spina Bifida. It’s personal preference. No one has a right to judge, no matter their life choices.

[@thewheellife9826]

I was born with Spina Bifda as well, The day this was posted was my 39th birthday. They did not have fetal surgery until I was a kid. I am glad babies can have a chance at a more "normal" life with this surgery. Obviously, they will still have SB but they may not need as much intervention. I have Mylomengocile. My lesion was at T12. I also have Hydrocephalus and a shunt. I have had two shunts in my life. Writing this as I'm watching the video. Everything you are saying I keep thinking" me too." I have been a lifelong wheelchair user. Latex allergy (which I tested positive for) tends to happen with prolonged exposure to Latex. Your son is adorable no matter what!

[@melodymackley6732]

I have spina bifida. I'm almost 23 yrs old. I've had over 28 surgeries since birth

[@LexieThiery]

melody mackley you are a warrior

[@melodymackley6732]

@@LexieThiery thanks. I have mine at L4-L5 too.

[@MamiFilipinaa]

Do you ever wish you never had Spina Bifida in the first place? Just curious

[@melodymackley6732]

@@MamiFilipinaa no cause I can do a lot of things just like a normal person just some things I have to be safe about and I'm still alive.

[@jenniferfonzo1168]

I was born with club foot, found out when I was in my 20’s I had chiari malformation and a tethered spinal cord. Prayers momma

[@JuliaM987]

I’ve followed your channel for a year or so now, and at the time you popped up on my recommendations. Maybe it’s because I’m from Southeastern Indiana and y’all are from northern Indiana, that your channel happened to be recommended for me. I’m glad it was, because seeing the journey since then has been truly a blessing. Y’all have handled everything so well and had a good look on everything that was thrown your way when it came to Azariah! And look at how great our God is! Azariah is as healthy as I and a bunch of people prayed for! 💕 I know what it’s like a little to have a baby with problems. Only mine was my niece having a very rare genetic disorder. We were blessed to spend two and a half months with her at Cinci Children’s NICU. As much as I miss her, we always tried to stay positive and never be angry. It wasn’t easy but now because of her, I have such a bigger outlook on others now because of it. I think I definitely pray a little harder for other people that may face issues with their children now, too. I’m so happy to see Azariah doing so well!

[@jessecac]

Love your videos! Just a tip: When you write the text, leave it up a tad longer. I am a pretty fast reader and cant get through it before it changes and disappears. I keep having to pause it to finish what is written :)

[@amyrendziak4956]

Jesseca Allen & Lexie I agree! My eyes can’t read it when it’s little. 😂 Also, when I pause it the bottom of the screen is covered with the video displays. 🤦🏻‍♀️ I don’t want to miss anything! ♥️

[@petrarabbit3995]

@@amyrendziak4956 when you pause just tap somewhere on screen again and the displays disappear then to start again tap and play... 😊

[@petrarabbit3995]

@@amyrendziak4956 thats what I do...

[@amyrendziak4956]

Petra Martinez i didn’t know that! Thank you!!

[@sparklingslimeASMR]

I was having a rough day last night and still was troubled when I woke up this morning. My anatomy scan is in a couple of days and I’ve been stressed about what the outcome will be. Watching this video compared to the first video when you found out, I see so much strength and power that you’ve reclaimed through the grace of God. Your faith and testimony were just what I needed to remind me that things are not in my hands and that regardless of the outcome, we serve a wonderful God. You truly embody Proverbs 31:25 and little Azariah is so blessed to have you as his mother. Praying for more miracles to come❤️

[@coffeeandbibletime]

Thank you for sharing this! He's got such a caring and God fearing mama :)

[@mariak.chalmers2577]

Why should you fear God?

[@rebekahmills3639]

@@mariak.chalmers2577 great question! There isn't a short answer but He is in complete control over every tiny detail of our life. He knows the words we speak before they're even on our tongue. It is His saving grace in sending His only Son Jesus to die for our sin that enables us to spend eternity worshipping Him. But it is also His righteous judgement which will send unrepenting sinners into an unimaginable eternity of fire and anguish in Hell.

[@drabby7925]

@@rebekahmills3639 that just doesn’t make any sense

[@rebekahmills3639]

@@drabby7925 I'm sorry about that, I'm not great at explaining things. Is there something in particular you want me to clarify? What I meant was that we need to fear God because He is so much bigger than we are. He is the one who gives life, He formed us in our mother's womb! But He is also the one who takes away. When we die, those who fear God- who recognise that next to him, we are nothing. We are selfish, greedy and proud beings who have turned our backs on God. We deserve an eternity in Hell. And this is what will happen to those who choose to live in ignorance and denial of God. If that is really not helping I'm sorry, if you have any specific questions though I'll do my best to answer.

[@Erin_Coke]

Azariah's story is already a lot like mine. I did not get my lesion closed until after birth, but his lesion is the same as mine. I can walk with a walker and I wear leg braces (AFO's). I did develop hydrocephalus and required a shunt shortly after birth (like, within a day or two after). The bladder and bowel control is a struggle, but using a bathroom break schedule really helps with that. Praising God little man is doing so well and I pray he continues to flourish!

[@brytaniegovea8269]

Thank you for speaking about the misconception about folic/folate acid. I was under the impression that SB was 100% prevented as long as you take it and learning that isn’t true was really eye opening. I’ve been wanting to ask about it for a while, but didn’t want to to come across like I was putting any blame on you or other mothers with babies who have SB. I’ve only been following your journey for a few months but I feel as if your videos have brought me closer to God.

[@judyshepplt3086]

Beautiful family.....It’s wonderful to see such a young Christian family. It’s off of a comfort to know that our God is in total control. Good luck to you

[@reed.7395]

So proud of that sweet boy, I can tell he’s already changing he looks like both of you. He’s perfect & I’m so excited to see how God uses him & you guys too! Just putting his story out there, I know you are helping so many people. You guys are amazing!

[@soniagiles8221]

I love your openness, your testimony is powerful and God is and has been in total control. I have shared a bit of my story simply because I want to share how awesome the lord is.. I am 60 years old and was born with a mild form of Spina Bifida, I had surgery at two and a half and wore braces at night for a year and at 4 began to walk with a slight limp on my own.. I come from a Christian family and the power of prayer is hugh.. I know that the lord had his hand on me.. I did everything my siblings did.. I am a mother of two and grandmother of 3.. I retired at the end of 2019 after a 20 year career in social services.. I am so looking forward to seeing the rest of little Azariah’s miracle..

[@janineaires8547]

I remember seeing your video where you found out Azaria has spina bifida and have been following you since... How our God has moved! How our God has blessed you! Enjoy every single second with your beautiful baby boy!!! Indeed a world changer 🙌🏼

[@hellelima6458]

Your story is close to my heart because we know the God we serve and nothing is impssible for Him. May God bless your and your baby's recovery and may your son be a living testimony to God's faithfullness.

[@choosnau]

So if nothing is impossible why doesn't god cure him or had prevented it from happening

[@xbritny]

My first son was thought to have SB but was diagnosed with Dandy-Walker syndrome. He was diagnosed with hydrocephalus at 4 months and had a shunt placed. I feel so many similarities to your and your family and send all my love and prayers! God has given our children such a purpose and testimony. Having my child with special needs has made me so much stronger, not only mentally but spiritually! You’re amazing!

[@carolryan2419]

It is so amazing what Drs. can do for babies born today with Spina Bifida although in the 50's it was called Spinal Bifida. I had a sister born in 1954 with the most severe case a baby could have and of course the Drs. said she would not live through the night and there was nothing to be done for her. She actually lived for 7 months and then passed away, she was just a beautiful little baby and dearly loved by her parents and siblings but it was God's will for her to go home to be with him.

[@caledoniabeautifuleden8584]

Oh my goodness Lexie, Azariah is beautiful! My ovaries just exploded! You are an incredibly brave and strong woman of faith! I am so proud of how positive and trusting of God you have been throughout this entire pregnancy! Thank you for sharing your beautiful and precious baby boy with us Sister! I will keep you and Azariah in my prayers!

[@tinaschill7104]

I’m so glad that you kept him. He’s a true blessing and a child of the most high God. Your amazing parents. I am so happy that I get to watch this little miracle worker grow.

[@michellecarter9876]

Azariah is quite the warrior! So glad he is beating all the odds. Awesome!!

[@marykearney4070]

I "broke my back" spinal injury, at age 17 and almost 10 months. My break was between L3 and L6. They opened me up on my left side through to my back and removed my two smallest ribs on my left side to graft to my spine with screws and a metal cage. I had numbness already occurring on my left side below my hip. That is why we went ahead with the surgery even though the fracture was small. I also had bone fragments that caused some complications. Now I am 32 years old and 8 months in 1 day. To say I am 100 percent "cured" or "fixed", would be a disservice. That being said I have full functionality as I did prior to the break, just with some added pain and extra precaution on my end. I wouldn't change any decisions leading from then to now. I pray for you guys, and am thankful it has gone so well. I continue to pray that it does, and during any rough times, I know God will be there and your family will find it's way! Stay safe and thank you for your time and open honesty with your videos!!

[@Twobagsnolegs]

I am 37 & I have SB. I have had a very complex life. I had had 62 surgeries. I am married & I have a 13yr old daughter. I would never change anything i have been through. I was in two comas & had an outter body experience. During that time my parents we're talking to the doctors about putting me on life support but at that moment I aw myself. I felt a hug and I knew I was not alone. God was there holding me. I woke up from the coma.

[@anna._.6218]

I’m so glad everything is going so well with him! ‘God has helped’ truly!!! You guys are all doing so good- well done! You all are really inspiring! Also it is so amazing you are using your platform to spread awareness and help other people 💛💛💛

[@staceygovender7720]

"For the battle belongs to you Lord "I'm gonna see a victory 👩‍🎤

[@alyseandrews1066]

You are so strong! What a frightening journey for your first pregnancy! I am so happy for the incredible outcome from his surgery and that everything is looking even better than anticipated!

[@lskaste]

My daughter was not diagnosed till she was about 14 days after she was born. She has coordination issues and is incontinent. However she walks, dances, and is very active... Huggs to you and your baby boy.

[@loganwise346]

My friend from church her daughter was born with spina bifida and she did have a struggle and got told she would never walk. Well she soon got leg braces and had to use a catheter. A few years later no braces and she can go on her own. She is 6 and you would never know that she has anything wrong with her. Thank you for sharing your story and always trusting in God. I love your videos and and glad to see you keep your faith even when you are thrown curveballs. God bless ❤️

[@YunissaA]

He is so adorable 😍 my baby girl was born with SB too she has 3 months I prayed so much for my baby because they said so many things and at the end when they send me home after all the tests she had they said I was taking a normal baby home with no special care Trust God your baby is a gift. Every time they give you a bad diagnosis refuse it and pray for his health by baby was diagnosed with 22q deletion syndrome but she has so much energy and at 2 months started rolling over and moves her legs like a normal baby May God bless you baby 🍼

[@kennedyklusmeier7996]

Such an informative video!! My mom did not have in utero surgery. I had out of utero surgery! I had to get a shiny at 6 months. I walk on my own! I had to cath when I was a baby and didnt have to until i was 16 i think. I am 20 now. I could go #2 on my own until I was about 18. Now I use enimas to go. Spinabifida warrior just like your adorable baby❤❤❤

[@buildingamystery74]

I’m super impressed with your level of knowledge. You basically explained everything accurately. I’ve got L4 Spina Bifida and I walked with KAFOs and crutches for the first half of my life. I mainly use a wheelchair now due to a knee injury and surgery. My Chiari Malformation is mild and has never really caused symptoms unless I lean my head all the way back. That makes me a little dizzy. I had a shunt for the first 2 years of my life but I had it removed because my hydrocephalus was not causing issues. I’ve not had a shunt for 34 years and never had a problem. Really hoping your neurologist appointment goes well and he doesn’t need a shunt anytime soon. My understanding is that the latex allergy tends to develop in children who have had multiple open surgeries due to latex glove exposure inside the body. Most surgical gloves used in hospitals are now made from nitrile. Definitely try to use nitrile gloves if you can because the allergy tends to develop over time. If he’s kicking or moving his little legs and the doctors are telling you he’ll do well, then I’m sure he’ll be a great walker. I’m sure he’ll do great whether it’s with a wheelchair or a walker or braces and crutches. He’ll just use the tools he needs and he’ll become an expert at getting around in his own way. My mother always said that having a kid in a wheelchair is like giving a driver’s license to a toddler. He’ll be running circles around you either way.

[@carolinewest2217]

First let me say how much I admire you and your husband. There are so many people who would not go through with the pregnancy after finding out that their baby had a disability, thank you for giving your baby a chance at a life. Nothing about life is truly normal anymore. I was born albino. Am I normal? I am for me I guess, for an albino anyway. He is adorable and y'all are going to be awesome parents. God bless your family. I hope you and your family have a great evening.

[@brookejackson8122]

Azariah is such a fighter I'm so proud of the little guy and I also have Spina bifida and my mom had surgery to close my back while I was still in her stomach and I'm doing amazing and can walk and don't need a wheelchair and I also have a shunt

[@jazlin2002]

You guys are absolutely amazing! The way the information just rolled off your tongue at such a young age is incredible. He's got a good mama! One lucky little man. I myself found out when I was 16 weeks pregnant that my daughter had Hydrocephalus. She had her 1st shunt put in when. She was 1 month old. She is now 18 and has had a few rough patches with infection and surgeries but at the moment she is doing well. She wore leg braces, used a posterior walker to walk for a couple years. (They told me should would never walk on her own. She showed them that they were wrong!) She had scoliosis at one point and was treated with a body brace. Now 18 her gate is a little off (walking abnormally, feet turn slightly outward). Other than that she is doing great! She has an amazing personality and is our little miracle! I'm so glad to hear that your little man is doing so good! 🙏 It stays that way. God Bless!

[@badrobotbaby]

My son (2.5 now) was born with a tethered cord and SB. He had a 4 hour cord release at 7 months. He is now fully potty trained- even over night and has had no mobility issues so far. It does happen. ❤️

[@therese_grimsdottir]

Oh my goodness I'm just staring at that adorable little baby the whole time! Thank you for taking the time to make this video.

[@lainewhite5691]

I feel like you’re one of my best friends I adore you guys.💞 I’m a (full time only parent) single mom to a little boy with autism and is non-verbal. I’m not sure if he will ever speak or if I’ll ever have a verbal convo with the love of my life. So I definitely relate to you on that, facing the unknown as a mother. Autism is also a spectrum condition where every child is different, so I have no way of knowing what our future holds. Like you, I’m just grateful for his existence and the biggest gift, being a mommy. Your boy will teach you more than you’ve ever known, I’m sure he already has. All my love!! I look forward to following along your journey, 💓💓💓

[@cathysnedegar6711]

Laine Please look up the website called Sonrise. It may give you some ideas about interactions with your son. I give it a shout out because I found some wonderful things there.

[@keilalondon9949]

Our God is awesome! May he continue to shine his blessings on your “World Changer”

[@LoveAuntAshley]

I was born with Spina Bifida 30 years ago and my lesion is at L 4-5. I have shunted hydrocephalus (that I've also had over 100 shunt revisions on) and I have had tethered cord several times. They didn't have the in utero spine closing surgery at that time so I am paralyzed from the waist down and use a wheelchair. I didn't have Chiari malformation but I had the surgery because I kept having shunt malfunctions. I wear AFO's (ankle foot othosis). I also have bladder and bowel issues and a latex allergy. We serve an awesome God though and he will always hold His chidren in His arms and keep them strong. I love how y'all depend on God so much! Y'all got this mama and daddy and Azariah! He really is gonna be a world changer and the love that he's gonna have is gonna be amazing.

[@gabbyareli1159]

My son has a shunt and unfortunately it has failed a lot of times. He was also diagnosed in utero with hydrocephalus at our 20 weeks ultrasound and he has had 7 brain surgeries so far.. they “highly recommended” that termination was the best option for us it looked very severe and his ventricles were just really big, but we also decided to leave it up to God 🙌🏼. He was full term and is now gonna be 5 years old this summer and is just the happiest kid doing all the things they told us he wouldn’t do like walk run talk feed himself.. These babies are here for a reason and your faith will be compensated just like ours 💙💙💙 keep trusting Him. Love and blessings to you guys!!

[@HisCuteNeko]

I was LITERALLY re-watching your birth vlog when this popped up! I’m here for it 🙌🏻

[@aissatousambe5075]

You know ur stuff MAMA!! I love it, never heard of SB, but I am so glad I came across this vid and ur birth vid! I cried with u. He’s sooo cute, he’ll be fine 🙏🏿

[@Bizygr2]

Very informative! Although, I found it very difficult to concentrate on what you were saying because I found I was distracted by the perfect precious little buddy looking so comfy. Honestly, it was a struggle! Enjoy the cuddles and snuggles!!

[@tamtam06111]

Thank you so much for sharing your story. I know this is still hard for you. I found out my baby girl has this at level s3. Two weeks ago. Trying to gather as much information as I can without stressing out. Staying positive and praying was hard to do at the beginning. But following you has really made this much easier. I watch your videos over and over I haven't found any others with as much information. So again thank you. Im praying for you and you beautiful lil man as well. 🙏

[@mariespence2980]

My little brother was born with the worst type. He has no feeling in his legs but he crawls and he has a shunt and has had Idk how many surgical procedures. We were not told untill every shortly before birth and was rushed to ruby memorial in Morgantown. He is high functioning and a truly amazing case. You are the first KZbinr I have every seen talk about it. I take every chance I can to talk and inform person about and how to prevent spina bifida.

[@Dranma51]

Such a miracle! I had a niece born with spina bifida long before they did pre-natal ultra sounds. Unfortunately when she was born she had developed a massive infection in the opening in her back. The lower part of her spine had to be removed and internal organs were affected. She lived to be 2 1/2 but was paralyzed from the waist down. She also had hydrocephalus and had to have shunts. She was the sweetest, smartest thing. She died of kidney disease but we were blessed to have her!

[@frankiekohl1593]

Hi Lexie I just saw your video. Azariyah is beautiful what a blessing from God he is. I will follow your journey and watch all the Miracles that God's going to do for your baby. My advice read the good comments ignore the bad ones.

[@lauren.as.an.esther]

That’s so heartbreaking that people choose to just give up their babies instead of fight😕 every life is worth living

[@briamorales2996]

Sometimes they won’t live a good quality of life. I just find out that my son has it. We are going to a special hospital to get a better opinion to see if he has a severe type. It’s not easy I could of easily said okay let’s just go ahead for a termination. Most women get a second opinion before they make a decision. I’m 21 weeks I feel my son move and I’m already in love. But it would be selfish of me to let him be born and someone would have to constantly take care of him. Like who would take care of him when I die or my husband? It is a lot to consider before women choice to go on with their pregnancy or termination.

[@GenevaJculla15]

Bria Morales ending someone else’s life is murder

[@MamiFilipinaa]

Carter M and bringing a child into the world who will face many surgeries, pain and hardship is not? Save the child a life of pain, instead of being selfish and just wanting a child regardless of the pain they will endure the rest of their life.

[@z4324]

I was born with spina bifida 34 years ago at a time when they didn’t know much about it. L5 S1. I absolutely love that you guys made this video and are making videos about it and your life and journey. I feel more people need to bring more awareness to it. I am very fortunate to only have paralysis below my knees. I’m so glad you brought up the facts about abortion and commend you for not even thinking about abortion. It’ll be a long road but I know you guys will do an amazing job as parents and that beautiful baby will grow up and do absolutely amazing thing! Keep being amazing.

[@keepthefaith2923]

Mine too is l4 and l5 ur sons spina bifida sounds IDENTICAL to mine. I don't wanna say this the wrong way but of all the Spina bifida's this is the "best one" to have. I cook, clean and raise my three kids alone. Can't wait for baby number four to arrive in October 2020.i can't eait to follow your journey x

[@murgy1234]

You are an inspiration for all parents out there! I admire your positivity all throughout your journey with your son. Azariah is incredibly lucky to have such amazing parents and I know you feel lucky to have him. I had no prior knowledge to spina bifida, thank you for sharing your story. Lexie, you are a world changer as well ❤️

[@TheOlive101595]

SOOOOOO crazy! There was an abortion commercial on your video... I respect and LOVE how you trusted God throughout this whole process. I love your testimony and how you can touch other people that might be in your shoes! Praying for yall

[@TheOlive101595]

The devil will try hard where there is good.. AKA the commercial on your AMAZING VIDEO or a testimony.

[@itsmeeabbyyy]

The statistic you gave about abortions also includes spontaneous abortions (miscarriages) and I think that’s important to include. He is a miracle baby!

[@madamguro6922]

What an unconditional love 💜 Sometimes we complain in life , yet there are a millions of things to be grateful for . Just having a daughter who from birth is normal is such a blessing for me but after watching your family's journey , I've been more grateful . Lexi , you are such a brave woman & truly trust the Lord completely. 💜🌹

[@ttfixmyhair]

Hi Lexie I'm almost 57 yrs old and was born with SB at the sacrum. Back then the mother didn't find out until birth that there was a defect. They were unable to give anesthesia to newborns so I didn't get the repair until 1yr old. Yes my mother is a saint simply for preventing the bubble of amniotic fluid from bursting. I walk and walked normally until in my 40's. Other factors including a tethered spine that cannot be untethered and injuries combined cause my weird gait now. I've lived a full life, married and gave birth to a perfectly healthy daughter. My family has been informed of any increase in chances of SB in their babies and we've just continued to live our life. My parents allowed me to do any activity I wanted. I rode motorcycles, climbed trees, jumped my bike on ramps and generally just did my thing. I did not play organized sports but it was my choice. I was very upfront with my now husband about the unknowns regarding having children, future trouble with walking and organ function issues. I did have a lot of bladder trouble and a few surgeries but I'm good. Blessings to you and your family.

[@mickiedelosreyes5481]

Leslie this grandma thinks you are an amazing mama. Thank you for educating others about SB. I raised a special needs child who wasn't supposed to see 5 yrs old. It's hard work but it's your child and so worth it. Btw she's 25 now. God Bless You and your little family.

[@spre1501]

Lexie thank you. I was born with Spina Bifida, Hydrocephalus and Chiari Malformation at L4/5 34 years ago. Your description and your information was great. Thank you for sharing. I am so grateful that there are so many advancements in treatment compared to when I was born. God bless you richly.

[@carmendossantos5966]

They also told us to abort our now 6 month old baby. He has a rare genetic disorder that caused him to have Agensis of the corpus Callosum with a cyst on his brain measuring 5 cm. We had to tell them to put it my chart we will not terminate as with each appointment they kept asking! May god bless this sweet baby! He will be used for gods glory!!!! In Jesus name!

[@autumngrace3135]

I hope all is well. So proud of you for loving so much and not caving in to them.

[@carmendossantos5966]

Autumn Grace he is doing amazing! Surpassing what doctors expected he would do! They told me he would be a vegetable! He is now working on learning how to sit and is such a blessing and beautiful gift from God! I know he will be used for Gods glory!

[@renaereps]

My 5 year old has absence of the corpus callosum and also has a fatty tumor in his brain that has lead to seizures. It’s hard, but he is doing great otherwise. Plays baseball, talks like an adult (LOL) and getting ready for kindergarten! These babies are fighters! 💙💙

[@carmendossantos5966]

Renae Lindzey thank you for sharing! That is so amazing to hear he is doing so well! May God bless him. We have another mri scheduled for July and if the cyst has grown he will need surgery. But praying to God that he doesn’t and everything goes according to his will! :)

[@renaereps]

Carmen Dos Santos I will be thinking of you and your son! Unfortunately (or fortunately depending how you look at it I guess), a main artery is running through his tumor, so surgery wasn’t an option. But it has calcified, so that was a blessing. I remember crying at almost every doctors appt. during pregnancy...never did I expect to have the boy I do now. Most people that meet him have no clue what he’s dealing with. 💙

[@Carr081411]

Your story is beautiful! The first video I ever saw was your positive pregnancy test and watched from their plus watched a lot of your past videos. Baby boy is beautiful

[@springalingading]

With the latex allergy it is a precaution. The more that a baby with spina bifida is exposed to latex the greater the chance of having an allergy to it later on. Still watching your video so not sure if you cover this but spina bifida may be avoided if you take folic acid (as folate) before becoming pregnant. Since you all want more children, I pray you supplement with folic acid (as folate) now and on-going. Oh, and I was in an online bible study a few days ago and I heard your sons name. I was like that’s Lexie’s baby boy. 💕 (ok, just heard you mention folic acid) God blessed you all with awesome victories. He certainly got the perfect mommy and daddy!

[@LexieThiery]

springalingading if you watch further into my video, you will see this is not exactly true. Taking folic acid doesn’t prevent this from happening, although it IS recommended to take a higher dose when planning a second pregnancy. 💕

[@amylinde7841]

My baby was also born with spinal bifidia. We never new our baby was going to be born like this. My baby past away when he was 7monthes old. Your videos gives me so much hope

[@heidirobertson6735]

I am a 50 year old woman born with spina bifida. I have 2 beautiful children, I also have a shunt that was put in at birth and I have never needed it changed or removed. thank you for bringing awareness of spina bifida.

[@Gotcha7474]

Gods grace is so evident through you guys. Your story and your journey is so inspiring. Just know you have touched my life, your wee guy and your reaction and how you have handled everything, staying true and showing your faith. This right here is testimony to God. I’m so thankful that I found your podcast recently!!

[@Stacey67643]

He is just precious!!!! Sleeping so sweetly and peacefully. Such a blessing.❤🙏

[@mlaine2]

Take FOLATE not folic acid. Some women can’t absorb folic acid properly. It’s a bit more expensive, but a very easy switch.

[@elliefriedman7622]

yes!! 5his is what we are learning in nursing school!

[@mfpJ4ever]

And methylated folate just incase it's the only kind you can absorb right.

[@grandmacheryl882]

Thank you so much for posting your family! You are a beautiful Christian mother and your son is a precious gift from God💙💙💙

[@joycebaker3798]

The things doctors can do now are so amazing. I babysat for a little girl with SB back in the 70's. Back then you had no clue until the baby was born. She used a wheelchair and had no control of her bladder/bowels. You a great mom already! You are helping other parents (with or without children with SB) to understand not to make assumptions about children with SB.

[@stacyfraley6046]

Gods amazing grace! Azariah is beautiful, I’m continually thankful and praying for his complete recovery. What grace the lord has already given is just a testament. Prayers and love always!

[@browningbarbie3520]

You guys are so inspirational! I'm from Canada and it shocked me when you said you had never heard of spina bifida before your 20 week ultrasound when you first heard the word! I learned in school from grade 7 to 12 all about birth issues like this one and how they can be prevented, treated, and all the ways to deal with issues that can happen besides abortion! I have been taking folic acid since I was sexually active at the age of 14 because there is always a chance to be pregnant when having sex and I have always been trying to prevent what I can so there is less to overcome later. It definitely makes a person stronger and you are an amazing woman and mother. God has put this weight on your shoulders knowing you could carry it and come out stronger! ❤️😊❤️

[@junocomm]

Thanks for sharing this journey already you are proactive and doing whats best for your baby boy. This is what he needs and it will help him have better outcomes as he grows. All the best to you. He's beautiful.

[@kristinhall4959]

Your such a strong beautiful woman/Mom🙏🙏🙏🙏 You are so in tune with everything that he may or may NOT go through.... he's sooo adorable and he has such an amazing Mommy and Daddy... he's so precious!!!! So proud of you, your doing so good momma, keep your head up and I will be praying for ALL of you!!!!! He's definitely a Miracle and he doesn't even know how many people are rooting for him, you & Daddy!!!! He's so precious!!!

[@heyitsmet333]

During your birth vlog on one of the close ups of his feet & he moved them, I ran into my bedroom where my husband was & showed him the video & through my tears i was saying "Look at his little feet move!!!!"

[@craigthiery1623]

Keep Your Lantern Lit God is good huh? 😭

[@heyitsmet333]

@@craigthiery1623 Yes He is 🌼

[@soniagiles8221]

Keep Your Lantern Lit , it’s just amazing and beautiful...

[@candacedeane5296]

My little one was born with hydrocephalus, multiple heart defects, and no thumbs. To this day she has not had to have an intervention on her head. Her head is in the 95th percentile but that’s ok. She has had multiple MRIs since she’s been born to monitor her ventricle size and they have grown over the last 20 months, but very very slightly. I was told she wouldn’t be able to do a lot of things and that she would be very far behind on milestones, but she isn’t. She’s right on track with everything. Her neurosurgeon continues to monitor her but just like you mentioned, he told us that the likelihood of needing a shunt after a year of age decreases significantly. I’m so happy that your baby boy is doing so well and will continue to pray for you and your beautiful family!!

[@linetteperlot6950]

U mentioned him having a defect... God created a perfect little gorgeous boy! As he is supposed to be according to God. He is your precious perfect gift! Amen and many hugs from Holland. I have been praying for u during your pregnancy and am thrilled to see your world hanger blossom...

[@anniehill2639]

You’re an amazing example of courage and faith

[@robinconrad3601]

I have a chiari malformation and I didn’t have surgery till I was 30 years old, I’m happy he’s doing so well, he will have a full and happy life for sure

[@candi4202]

My son has spine abifita. His lesion closed on its own in utero. He was very lucky. We were blessed. And your baby is a beautiful blessing and so happy for you guys

[@lollysjourney2782]

He's perfect, and God is going to continue doing his great work and baby is going to grow and be strong ❤️😘

[@annasmith4911]

I was born with spina bifida as well and had surgery at birth, i am paralyzed waist down, cannot feel much legs below my upper thigh and have a shunt as well and thank goodness (knocking on wood as i type this) have not had to have anything done to my shunt in 20 years it is still functioning the way it’s supposed to! I’m so glad he doesn’t seem to need a shunt and doesn’t seem to be having any major “complications “ from the spina bifida and hope the best for you all!

[@saramccahon2784]

what a blessing that sweet baby is and what a gift a godly mama like you is! i can’t wait to see what the Lord does in and through your sweet family.

[@stesan60]

Love how you open your video with a song we sing at church. :)