Bentley’s Second Chance – Part One: Meet Bentley | Boston Children’s Hospital

It went very well the first twenty weeks. When we went in to do the gender reveal ultrasound, I could tell something was wrong, and I’m like, “What do you see?” and he’s like, “Well,” he goes, “it’s not good.” They said that there was no chance he was going to live. It was a tough pill to swallow. In my wildest dreams, I never thought that I would be in this kind of situation to make such drastic decisions. We were never really given hope, so we had actually decided to end the pregnancy. We got to the point of the night before the procedure to end it, and I wouldn’t do it, I just had it set in my head that he wasn’t going to turn out the way they thought he was. They first kind of described what to expect when he came out was, he won’t talk, he won’t move, he won’t know when he’s hungry, he’ll just be a shell. But, he came, and he came out kicking and screaming, and we kind of just looked at each other like, they told us he wasn’t even going to breathe. They set us up with pallative care, We had all this information about funerals, He was never looked at as a baby that’s going to survive. We took him home and he kept thriving. He was moving and he cried when he was hungry I couldn’t make him out any different from my first son. He was just a normal baby with something on the top of his head. When we met with the neurosurgeon in Columbus, he had made it sound like it was just going to be a simple procedure. He seemed super confident, he was like, “What we’re going to end up doing is just cutting that off, kind of reshaping the top. It’s just damaged tissue. There’s no way it could be functioning.” But, from the beginning, we didn’t understand how he wasn’t using the brain. We always felt, that maybe he was using what was left up in there. We decided to get a second opinion in Cleveland. The doctor we’d seen there, she was not entirely sure that he was going to survive the surgery. We were already looking at information on where, you know, kids that have this go to and we found Boston. So when she said that she had people in Boston that she knew, we were like, “Oh please. Just send us there.” Dr. Meara was the first person that we actually got to talk to, that we felt comfortable, and knowing that he knew exactly what he was doing. Very relaxed, very calm, explained everything. And for him to say, “Yes, there is a good possibility he’s using the brain.” We left there feeling very, very comfortable. We’ve been through so much from the beginning, being told, “he’s not going to make it,” and him always proving everybody wrong. I think we’re finally at this place now, at Boston Children’s, where the people that he is being taken care of by is actually fighting just as hard as he’s going to fight, and that was the best thing, that I think we’ve had happen so far in this journey with him.

100 thoughts on “Bentley’s Second Chance – Part One: Meet Bentley | Boston Children’s Hospital

  1. Boston Children's hospital is amazing. Back in the 70's I was a baby. Many health problems. My parents brought me to doctor after doctor trying to get a diagnoses as to what was wrong. They then decided to take me to Boston Children's Hospital in which I was diagnosed as being Epileptic. They are amazing. They had the technology and great minds to finally understand what my health issue was. I am now in my late 40's and still grateful.

  2. How does this happen?! I've heard that mosquitos, carrying the Zika virus, can cause anacepholy if the mosquito bites a pregnant woman in the early part of her pregnancy.

  3. i was born with the same thing but in the back of my head, I'm 23 years old, my parents didn't get much hope from the doctors either but they never gave up, they say I'm their miracle and I'm grateful they didn't give up on me. I'm glad that you didn't give up either and I'm praying for you and your family hoping everything is well with you guys and continues to be that way.

  4. i really don't like how during surgery they removed a sectiom of brain tissue because it "crossed hemispheres". Who knows the effects of such a decision?

  5. I couldn't bring a child into the world with this condition as they will not be able to like a normal quality of life

    If I fell pregnant again and me and my Husband was told that our unborn son or daughter had encephalocele then we would choose abortion as we wouldn't want our child to suffer

    If this offends anyone here then that's your problem not ours

  6. He’s so cute, he’s got the brightest blue eyes I’ve ever seen on a baby 🍼 you are great parents don’t ever let anyone think that your not.

  7. Oh! He's beautiful. Like the person below me was saying… that's a head full of hair. 😘💖
    He's a trooper.

  8. I saw in the description it said yoder…I couldn't stop reading the rest in a Yoda voice…sry if that's uncalled for

  9. God bless these good parents and the wonderful sense if family you 2 have. May god protect all 4 of you.
    Don't forget to nuture your other little boy along the way.

  10. What an adorable little guy! My heart goes to mom and dad, for being stand of parents. While many terminate or give up babies with deficiencies, these two wanted and love their baby!
    Cutie was born into a great family!

  11. Oh he is so cute my son was born with three of those on his head,and every day I pray and rub his head with olive oil,and each morning they would get smaller,until God finally deliver him,and he pass out alot of fluid through his nose,and now he is 8 years old thank God for my son my only child.

  12. I would like to say God Bless “Little Bentley’s” heart and his parents you guys are so strong and your son is adorable!!!!! I wish Bentley all the luck in the world. Parents stay strong, God has a plan and purpose for your son he’s too precious and he was supposed to be here on earth no mater what! God speed on his surgery and may God keep him, touch him, and watch over him! Amen…..keeping your family in my prayers! Makeda P.

  13. He's now a healthy active three year old boy who can now recognize his and his family's names and expressions, he's also walking now and talking up a storm

  14. I have a friend who's second son had this when he was born. He was operated on as a baby and now is 28, married and a Police Officer . Don't let people steal your hope! There is often technology and skills in a hospital somewhere that can lead you to someone who can help. And these days they are much easier to find! So glad you didn't abort him. Your son is lovely and o'h, that HAIR!

  15. A little confused as to why a medical professional would say that the child would not breathe at birth but also would not talk, walk, or know what he wants..If the child is born not breathing then how would it live long enough to not talk and walk or know what it wants? They expected him to be born not breathing but to some how continue to live long enough to not talk and walk?

  16. لا حول ولا قوة الا بالله العلي العظيم الحمد الله والنعمة لله يارب رحمتك وعفوك يارب الحمد الله الذي عافني بما ابتلي بية غيري وفضلني عن كثيراً من عبادة الصالحين يارب اشفي كل مريض يارب يارب الحمد الله والنعمة لله يارب اشفي كل مريض يارب
    God bless all of world

  17. He has a little hat it’s perfect i love it makes him special and I would love to meet him the one thing you could learn from him is everyone has a chance to live as long as you have a will to live no matter what anyone says or does

  18. Who can gain say the Lord? They said he would be a vegetable but he's a normal child except for that growth atop his head. Bentley is for signs and wonders on this earth! Hallelujah!

  19. He is a handsome sweet child, and you parents are strong, corageous, loving people. I pray for you all that things will work right 💙💙💙💙💙

  20. Thank you for sharing your amazing story and you guys are incredible and I wish you much love and joy, Bentley is a true fighter xxxx

  21. I think when you have such a beautiful son and he will continue to prove everyone wrong! Beautiful child and family with extra special big brother 🙏🏻

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