Born with Spina Bifida: Blake’s Journey Home

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Aric: We’ve always wanted to have a family
of our own. It was always our desire to have kids. Megan: It took us a long time to get pregnant.
It took us three years for Eva. Two years later we have Macy. Aric was working out
of town six days a week and was only home basically on Saturday and Sunday nights and
Blake happened on one of those nights. The first trimester was normal. Everything was
great on May 10 we went in for our 20 weeks scan ultrasound. I’ve had two other kids,
I’ve had other ultrasounds so I know they can have fun with it and they kind of watch
more and there was none of that so I kind of knew something was off and that’s when
my doctor came in and said, “I don’t know how to tell you this but there’s something
wrong with your baby.” [Music] Megan: That’s when he went on to tell me about
that he has spina bifida and that there is fluid on the brain. His brain is being pulled
back, terms like this that I’ve never heard of before. I just sobbed and cried. Dr. Teich: Once the fetus is diagnosed with
a problem what happens is that the coordinators from whatever referring hospital will call
Children’s and setup an appointment for us to be seen by the appropriate specialist. Dr. Governale: They’re different people who
know a lot about those different things. So by working as a team you get that high level
of knowledge across all those specialties that can be involved in something with wide
reaching implications like spina bifida. Dr. Teich: And they can also decide where
they want this baby to be delivered, how they want to be taken care of, I think it really
helps knowing ahead of time. And we give them a tour of the hospital we show them where
they’re going to be. We really want the family to be comfortable. [Music] Megan: I felt better. I felt like we could
do this. I felt like this is something we can overcome. There’s still a lot of question
of what does this mean for our lives? How’s this going to impact us? How’s this going
to impact our family? What do we need to do? Lots of questions still but we left feeling
hopeful. Dr. Governale: I want the spinal cord forms
during development in the womb very early in the womb. It forms as a tube which rolls
up from skin and then detaches from the skin. Myelomeningocele is spina bifida is when that
bottom part of the tube doesn’t break free from the attachment and stays open to the
skin. Megan: There’re four levels of your spine
and his is the lumbar level. Most commonly with this type of lesion level we see kids
that don’t have feeling from waist down. We don’t really know exactly what type of care
he’ll need and a lot we won’t know until birth. His room’s ready, clothes are brought, diapers
are ready. Eva is very excited she will tell you that he has spina bifida. That’s him. Aric: There he is, there’s the spine. Eva: He has B bone in his back. Aric: Where is he right now? Dr.: So today we are going to deliver Megan’s
baby by cesarean. Megan: Just waiting and waiting patiently. Aric: A little nervous, it’s kind of intense,
it’s getting more real but we’ll get through it. Nurse: That’s when we’re going from the OR
to the NICU maybe we’ll be able to have family come and see him and I’ll have you guys sign
consents for Children’s Hospital, they need consent to transporting. Aric: Just see you later. Nurse: We’re going to go right out around
this way. Aric: There’s still kind of unknown factor
of not knowing what to expect once he goes to Children’s. I know they’re in good hands
so there’s not too much to worry about. Dr. Melillo: When they have spina bifida you
do not want them to be delivered vagially because you don’t want to disrupt the defects.
Right now the baby is breached we’re going to probably have to do a classical C section
which is safer for the baby and probably better for Megan as well. Our job is to deliver the
baby safely and then the baby off to the people here they stabilize the baby, get everything
set and it’s seamless, it’s one of the great things about working here and being hooked
up with Children’s here is that we do our job and then it goes right down the line everybody
does theirs and you have a baby that gets the best care possible. Nurse: Nice and pink, breathing on his own
always has. We’ll dress him over his defect and dads got to picture he can show you so
we’ll see you down there OK? Hey everybody this is Becky Myer and we’re bringing back
this little boy Blake Mumford who is with his mom Lucille and we’ll be back to the NICU
in a few minutes. Aric: A cute little one too. It was nice
for the family to be able to see him. He’s doing good and we’re happy best possible outcome. Dr. Mohyeldin: He’s scheduled for first case
tomorrow morning. I’m going to talk to the mom she’s over at Riverside still? All his
vital signs looks perfect to me we have really 72 hours to perform this surgery, close the
defect up and protect his central nervous system from infections and all the other possible
problems that can arise from it. The advantage that we have here is when we see mother’s
prenatally before and time everything properly, have a healthy delivery. We can get them to
our hospital, stabilize and ready to go to the OR within hours and that would be the
case for him. Dr. Governale: OK so the neuro surgical aspect
of closure of an open myelomeningocele is identifying the open spinal cord which is
attached to abnormal skin, separating it from the abnormal skin, dropping it down into the
spinal canal, trying to roll it together if it will come close if not it’s OK then defining
the Dura the layer cover the entire brain and spinal cord which is also stuck to the
skin identifying that boundary, separating it from the skin, dropping it down, bringing
it together close and suturing it water tight so that the spinal fluids stays in and doesn’t
leak out. From my perspective I think there was a good border between a spinal cord skin
and good layers. My perspective went fine it was straight forward for me. Aric: We’re just ready to get our family
started, get through all the hurdles we consistently heard he’s doing great. I really want to hold
him bad. Dr. Spaeth: Having the multiple layers closed,
or having the spinal content back where they should be but then also have them layers of
muscle and skin over top will make that repair more robust so it won’t be as thin, it won’t
tend to break down, it will actually be stronger all along. I think everything went really
nicely and smoothly. It is always a pleasure working with the neurosurgery team here. Gives
our patients better care to have a multi-disciplinary care. Aric: Hi. Dr. Spaeth: I’m Dr. Spaeth I’m playing the
plastic surgeon. Everything went well as far as the closure so if you kind of look at where
your spine is you got muscles on either side and then there was the skin and the middle
part was stretched out. He’s got an incision that’s about nine centimeters long, it doesn’t
sound very long on little guys. If there’s got a progress or anything that we’ll be updating
you guys. Aric: Megan will be happy to hear it. Megan: Hey. Aric: Ok I’m with the plastic surgeon, said
everything went fine, said he’s going back up to his room. Megan: OK finally got to see him. Aric: As soon as I get off the phone and
you get up the elevator. Megan: OK go do that. Aric: Can’t really ask for anything better.
All the doctors said he did fine, he’s doing fine now, he’s just recovering. Megan: Discharge and he came straight here
and got to hold him for the first time. It was amazing we need it a long time. He’s feeling
really well, doing well, back seems to be well and the nurses have been amazing, and
awesome, and very caring, and informative, and the care has been great. [Music] Dr. Richter: he’s actually doing very well.
He’s recovering from both of his surgeries, the cerebral spinal fluid is made in the brain
and it typically drains out kind of the back in the bottom of the brain but that drainage
can become blocked. Just with spina bifida so that’s why we have to put the shunt into
bypass that and allow it to drain a different way. And so he has loops of tubing in his
abdomen and that’s where the fluid drains in to his belly so that his body can just
re-absorb all the fluid and the things that are in the fluid that’s actually good for
him. He doesn’t move his legs much for now we’re just waiting for him to gain some weight
and do some of the things so that he’s ready to go home. Hi mom how are you? Megan: Good. Dr. Richter: He looks good. I saw that he
gain weight last night. Megan: Blake’s been here for two weeks now,
I’m here just hanging out with him and cuddling with him, and he’s doing great. Nurse him
for the first time yesterday, it was awesome. Very excited to take him home. The biggest thing he’ll need at home medical
wise is cathing so we’ve been learning how to cath him on our own, I practice a couple
of times we’re ready for him to come home. [Music] Aric: Seems doing a lot of the nurses and
doctors. For most they treated Blake their own kid. Megan: Nurses have been awesome, they’re like
angels. Aric: They’re very encouraging as far as
getting us involved in his cares and being more hands on. Megan: He’s feeling really good, he looks
great, his back’s looking great. Aric: Just glad to be getting home. Megan: The whole family’s coming over tonight. Nurse: Congratulations. Aric: Thank you. [Music] Megan: We’re here at Myelo clinic at Nationwide
Children’s this for his first round of check-ups. Margaret: Myelo clinic is kind of a long day
but it’s wonderful that we have a whole team for the kids to see. When he comes he sees
developmental pediatrician or urologist, orthopedist, neuro-surgeon, occupational physical therapy,
social work if needed, we also have nurse psychology for when he gets older. Megan: I’ve been excited for today just to
make sure we’re doing things right. Aric: Today for me is more of getting to
know the doctors, who they are, kind of build that relationship. How you doing? Nice to
meet you too. Renee: I’m a hugger. Ok so I’m from neurosurgery
and I’m a nurse practitioner, I work with Dr. Governale and the whole team. My job is
to work with the surgeon and if I see anything that’s wrong then I go and talk to them. This
looks amazing, it does and I’m going to check his shunt. He’s at 1.0 see? Margaret: What’s nice about that clinic is
when they come, they see other children, other families that they can meet and it’s very
helpful to kids of different ages and different function and I think that’s really fun. [Music] Aric: Blake’s four months old now, he’s going
through a couple of surgeries that do adjust his shunt kind of monitor that in clinic to
make sure that fluid doesn’t build up to unacceptable level. Now it keeps thing around it even feel
so we can kind of concentrate more on the baby and not his disability. Megan: Some days are hard, some weeks are
harder than others but the most part is has been joyful and fun and enjoying him a lot.
Blake right now really is the physical therapy going to Myelo clinic every three months at
this point. He’s a lot of hip movement which have been really encouraging to the doctors.
His plastic surgeon doctor really didn’t expect to see that so we’re all very hopeful that
maybe he can walk with help, we’re praying for that. Aric: Everybody around just loves on him
as if nothing was wrong. Megan: I think the support of the medicine
group has been really great. I think it would been all heard to go through the pregnancy
and everything you’re going through with all of them because I felt like I really did feel
like I can call them any time I had a question and that’s always answered right away. Aric: They don’t really miss a bit, it’s
kind of a seamless transition from doctor to doctor. Dr. Teich: It’s a great thing that we do in
Columbus, it’s nice to have all the different hospitals together because we actually will
discuss cases and we can learn from each other. Everybody benefits form this. Megan: I just hope Blake’s happy, I hope he’s
content with who he is. Aric: Since he was born he’s been having
surgeries and he’s been fighting it along the rest of his life to continue to fight.
His parents and sisters, and the whole family to support him, come cheer him on. We wouldn’t
have any other one. It’s very unique and you know it’s part of the reason why we love him
even more. [Music] Aric: There’s not another Blake anywhere. [Music] Aric: There’s not another Blake anywhere. [Music]

 

42 Responses

  1. Brock Roshon Brock

    March 1, 2014 10:26 pm

    33 years ago I was born with Spina Bifida and & Hydrocephalus. I wish Blake and his family well. The doctors and nurses at Nationwide Children's Hospital do a wonderful job. Please keep up the wonderful work you do every single day.

    Reply
  2. Jan van der Meer

    August 2, 2014 9:24 am

    Have U Pampers for many poor Kenya Kids with SPINA BIFIDA? Help Help!!!  https://www.facebook.com/groups/VolunTourismTips/  

    Reply
  3. Esmeralda Rodriguez

    March 12, 2015 2:44 am

    My daughter was diagnosed with Spina bifida before birth, I had fetal surgery at 23 weeks, she was born premature at 29 weeks due to the fetal surgery and one of its risks, once I had the fetal surgery, fluid stopped going to her head, she was born a couple days after Blake, her name is melanie, born on September 29,2013 birth weight 2.9.

    Born at 29 weeks
    On the 29
    Weight 2.9 at birth

    If anyone can contact me about spina bifida I would really appreciate it. I am still learning more about it, and just learned to catheterize my daughter, because she had too much pressure on her bladder…

    Reply
  4. thara ravishanker

    June 17, 2015 8:03 pm

    They should have asked questions on the Spina Bifida Kids forums. The information given by OBs/Gyns tends to be wrong or outdated. It's not "NikU" it's NICU.

    Reply
  5. fati flora

    October 10, 2015 9:32 pm

    je suis marrocaine j ai eu un enfant avec spina bifida et hidrosifali mes les docteurs ici comport les gens malad comme des animeaux et pire ils ont lasser mon bebe mort a lage de 4 mois avec une hidrosifali mal opere et spina bifida non opere tous simplement ils ont tuer mon enfant walid

    Reply
  6. Jennifer Farrell

    December 25, 2015 1:34 am

    I was born with Spina Bifida 41 yrs ago. My spine was repaired the next day and I developed Hydrocephalus when I was six weeks old. I wear AFO's and use a wheelchair because it has become harder to walk. But, PRAISE GOD I'm ALIVE BECAUSE HE LIVES! 😇

    Reply
  7. Sein Thu

    January 24, 2016 3:28 pm

    I born with spina bifida and I didn't repair until I was 21 year old. doctor from my country suggest me not to repair till my born were stronger. Thanks for the advised, because of that I don't have any walk abnormality as others spinal bifida kid.

    Reply
  8. Molly Mayor

    February 11, 2016 1:46 am

    My sister was born with spinabifida and hydrocephalous 53 yrs ago she was one of the first children in Australia to have a shunt. She is 53 has a so. Drives a car and lives a normal life she still has her shunts replaced and her body is slowing down but therce is always hope . I am so happy you have all the medical support 53 yrs ago there was little know. And mum was to,d she wouldn't walk talk or live past ten yrs old. And here she is so be brave little Blake God has a plan for you xoxox

    Reply
  9. Micheal Guardian

    June 22, 2016 6:49 am

    I was born with that too. but now that I am 21 years old my back hurts so much more than I was little. I was told I needed to get Sergey for my back…but I'm afraid that if I do than what if I cant walk again?? and as it is i already have a problem with learning in college ad it is. I want the Sergey but scared at the same time…

    Reply
  10. Cynthia Rodriguez

    June 23, 2016 7:42 am

    It's so wonderful to see (2) full grown men taking such care to transfer these precious babies to their destination hospital! I believe it's a specialized field, and these men chose to take this on as their EMT/paramedic training rather than an EMT/paramedic for adults with Nationwide Hospital. I assumed it would be mostly women, so that's nice! Not to mention, most men are terrified of holding babies, so I'm sure the men in this particular field at Nationwide are more tender towards them!!LOL So sweet!

    Reply
  11. Shamima Ahmed Nipa

    August 29, 2016 5:00 am

    my son was born with spina bifida & hydrocephalus…now he is 5 years old….recently open heart surgery has done….now he is well but he can't walk.but Dr. said he needs proper &regular treatment (therapy ). in this reason I'm really unhappy ….

    Reply
  12. Sandy Fritz

    November 8, 2016 1:48 am

    my sweet little Mackenzie was born with spina bifida and hydrocephalus she currently has 3 shunts in her brain and also has epilepsy. she is a wonderful piece of work for this Earth having a special needs child makes you see what really is important in life they have an unconditional love just hang in there little Blake will do great. someone once told me that God only gives special children to special parent. so just remember that and you'll do great.

    Reply
  13. G R E E N 凹

    January 15, 2017 10:46 pm

    9/11 a baby was born? that sounds like a terrible birthday that to have the tragic moments and also a birthday

    Reply
  14. Tanya Brown

    January 26, 2017 1:22 pm

    I wonder how many babies are ending up with spina bifida due to their mothers having the MTHFR gene mutation affecting their folate which could be preventable if they had been on other form of folate and not the commonly given one.     I have a double couple of that mutation and though I took folate supplements during pregnancy, my daughter was born with a very rare neural tube defect (she has her lumber spine affected) .. causing many of the issues seen in spina bifida.

    I was told by doctors at our childrens hospital when she was 2 years that my daughter would never walk (she had no feeling in some places before her waist and couldn't coordinate her legs to crawl).  As hospital had given up on her, we  took her to a chiropractor who gave showed us different physical therapy to try on her which she hadn't had at the hospital  – cross crawling exercises which were done with someone moving her legs and the other moving her arms in a certain way together.  We spent 10 mins-20mins a day doing this on her (she really hated it and would scream to have to lay there with others having to move her arms and legs)… all the effort though paid off. 

     At the age of 2 years and 4 months, our daughter finally was able to coordinate her legs to walk and finally took her first steps with the aid of some crutches her father had made to help take some of the weight off her her legs and help her stay up.  (Our hospital didn't get her a walking frame till she was 2 and a half years so thankfully daddy was able to come to her rescue with his wielding schools to help make the aid which first helped her to walk!!!).  She was then  able to start to walk unaided at times a 3 and by 4 years old,  then needed her wheelchair for school excusions.  By  high school.. she wasn't needing her wheelchair at all any more and as an adult now she doesn't even now have to have a wheelchair (I think she was 13 years old the last time she needed to use one).

    IIt was a long slow progress having a child with spinal cord defect.  She even gained ability to use the toilet for her bowels when she was partly through  primary school and was then only in nappies then for her urinary incontinence.  We knocked back surgery for a permanent cathater as we were told if they did that and made it so she had a bag or urine/faeces that that surgery was irreversible. I'm so glad we said no to that surgery as if we had go gone along with that at that point of time she may not have ever gained her bowel function as she did when she was a bit older. (a couple of children my daughters age who had the surgery re incontinence and then had bags, both of them ended up with complications from the surgery and were then in and out of hospital for a long time due to this).

    anyway, best luck to anyone who has a child with these kinds of issues.. go by your own instincts when it comes to your children.  Keep trying to do thing which may help them as twice the hospital got it wrong with our daughter and she started doing things we were told she never would be able to do.

    Reply
  15. Ramon Abreu

    February 20, 2017 1:03 pm

    Hi,have a 8 year old stepdaughter and she was born with spinal bifida can anyone tell me how can I get help for her please.

    Reply
  16. Lisa Atkinson

    February 25, 2017 5:36 pm

    my first and only grandchild has spina bifida stage three but he was born asleep he had other things wrong with him aswell I'm from England

    Reply
  17. Modassar yasin

    May 23, 2017 5:09 pm

    my daughter born with menigomyicele but after 2 month operate from hameed Latif hospital Lahore my dauther motion is not stable and not controll on bellder plz advise me I am to much woried

    Reply
  18. Mà Rwä

    June 27, 2017 9:00 pm

    Hi, I'm Marwa from Algeria. I have a sick brother with Bifida. All the doctors say that he has no hope. He is 9 years old without any mental retardation. He can not walk if there is hope.

    Reply
  19. Salora Rae

    January 3, 2018 9:28 pm

    almost 13 years ago i was born with spina bifida and hydrocephalus and was diagnosed before birth. thankfully i don’t have the worst case and the damage is very low down so thankfully i can walk.

    Reply
  20. Ruth Thomas

    January 25, 2018 3:47 am

    This is so amazing! I am a clinical laboratory technologist (run blood work etc.) The hospital where I did my training had an entire wing for neurosurgery, including a pediatric unit, so I saw quite a few spina bifida cases. The horrible thing was, because this was 1965, yes the dark ages, parents were usual given a grim prognosis. A lot of docs routinely told the parents it would be best to just not do anything (even closing the defect) and just basically let the baby die. I was so upset about this; how could any parent just let their baby have no hope. Well, later in that year, I worked in my church's nursery, and because I could pretty much handle anything, they brought me a very special baby I will never forget. I am crying as I type. The baby had untreated spina bifida! And, the parents actually told me that he didn't need anything special (like love!) I was so upset I couldn't even say anything. I ended up taking care of him for the rest of his life. He lived 11 months, and every time I saw him he was dirty, and was so miserable. To this day I hate those people although I will never likely see them again.
    I am so sorry to go on and one, but I wanted you to know that Blake is a beautiful baby, and has a beautiful family to love and support him. Congratulations!

    Reply
  21. Hello Sweetheart

    May 9, 2018 2:06 am

    My nephew has spina bifida and he lost both his parents and lives alone now at 21, hes mentally probably 14 but has a housekeeper, and an aunt to take care of his bills. He walks everywhere even in the winter and he's slimming down but he'll always wear plastic briefs and someday need a wheelchair but he's a happy guy!!

    Reply
  22. asrafil Portuqal

    July 29, 2018 9:20 pm

    Five days ago he was born to a child but he has a cleft back and has undergone surgery 48 hours after he was born. But the feet do not move. Is there hope of healing and will he survive?

    Reply
  23. Jhana Matthews

    August 11, 2018 6:01 am

    I was born with spina bifida and hydrocephalus, do u all stop and think that bc of ur mother having not enough folic acid in her system maybe just maybe that's the reason y you hv spina bifida? Bc i for one am tired of not knowing y I have spina bifida. Every birth defect has 2 hv a reason

    Reply
  24. Viayney Hermosa74

    September 3, 2018 4:33 pm

    Admiro esos padres yo lloraba mucho cuando vi a mi bebe entre chock no lo podia creer como un bebé puede naser asi fue increible para mi y asta hoy dia me duele pq sufren mucho los bebes y uno de madre

    Reply
  25. Viayney Hermosa74

    September 3, 2018 4:37 pm

    En el hospital de childre ay doctores con gran experiencia el dontor quiry opero a mi bebe los admiro que Dios lo bendiga siempre

    Reply
  26. Frank Monroe

    January 7, 2019 5:27 am

    I have spina bífida an the doctor told my mom I wasn’t even gonna walk or talk or move jst stay in bed and look at me now 21 years later I’m still here walking typing an moving around an happy an full with joy ❤️ I love who I am an I love myself ❤️ and I’m a makeup artist following my dreams

    Reply
  27. Donna Piaggi

    February 25, 2019 3:39 am

    Thank you both for sharing your baby's story. I'm a nursing student and it helps me to understand not only the medical side but what the parents perspective is. Thank you and I hope Blake is thriving.

    Reply

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