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Featured Family: Summer and Paxton

posted Feb 4, 2016, 6:01 PM by Adel DiOrio   [ updated Feb 5, 2016, 3:07 AM ]

On this day last year, 

No one told me how my life would be more beautiful when I had my baby. 

They didn’t tell me that his smile would make the worst moment, the best. 

They didn’t tell me how time could stand still, soaking in the moments. 

No one told me that I would wake up beside the happiest baby alive. 

No one told me the joys that I would have with him. 

They didn’t tell me how my chest would burst with pride when he figured out a new skill. 

No one told me how willing I would be to do anything for my child—anything he ever needed. 

No one said he’d light up the room. 

They didn't say his eyes would be the biggest, brightest, twinkling brown you've ever seen. 

They didn't tell me he would look just like me. 

No one said that I would laugh so hard I would cry when I heard HIM laugh. 

No one told me how much fun playing with plastic animals at bath time would be. 

They didn’t tell me how 8 months could seem like yesterday. 

No one said I would need him like I needed my next breath. 

No one told me what a precious soul he would have. 

No one told me I wouldn’t care if he could walk, just as long as he was mine. 

No one told me he would complete me. 

No one told me that I would grow closer to my husband. 

They didn’t tell me my heart would beat faster when I saw my husband with him. 

No one told me I would grow closer to God. 

No one told me I would be willing to lay down my life for him without a second thought. 

No one told me how in love with motherhood I would be. 

They didn’t tell me he would be the best thing that ever happened to me. 

No one told me all the happy moments I would have with tear-filled eyes. 

No one said that 3 am would be one of the sweetest hours in the day. 

They didn't tell me how "normal" my life would be. 

They didn’t tell me that life would go on. 

They didn’t tell me to take the next breath. 

No one told me any of those things...

    
On this day last year, they just gave me facts. Cold. Hard. Facts. An opening in the spine. The spine didn’t close. Spina Bifida. Myelomeningocele. The most severe form. Paralysis of the lower extremities. Bowel issues. Bladder issues. Possible hydrocephalus. Nerve damage that can’t be repaired. A possibility of brain surgery days after being born. A surgery to repair his back the day he’s born. Time in the NICU. Learning disabilities. No movement. Wheelchair. Braces. Therapy. Hospital stays. Clubbed Feet. An appointment to see a specialist. Permanent damage. Continue the pregnancy. Abort the pregnancy. Fetal surgery. Post pregnancy closure. Bed rest. LeBonheur. Philadelphia. Surgery while he's in your belly. There's major, life-threatening risks. If you go into labor, whatever you do, make it to Memphis. They told me these things.

February 4th will be a day I will always remember. I can still feel it. Not like I felt it that day, but the feelings are still fresh. I had only planned to take half a day at work—I would be back right after lunch. Little did I know I would only work about 8 more days. This day last year was the hardest day of my life thus far. Hands down. I prayed. I prayed a lot. It was about the only thing I could do. That, and cry. 

I often look back and give a little chuckle. 

We were in a whirlwind. We didn’t know which way was up. If only I could go back and talk to myself and tell me what I know now. Better yet, I wish I could have just fast-forwarded life about 8 months and see us now. See him now. But, I am thankful for the struggle we had. It brought us to where we are today. It makes us more thankful. It makes us take joy in the small things. It makes life more real. It showed us that we’re not in control of our lives. 

Do I wish Paxton didn’t have spina bifida? Sure I do. What mother wouldn’t? Would I trade him for anything in this world? Not a chance. This guy, this guy right here, was our “bad news.” Praising God for "bad news," news that's not our will, not what we want, because this is what's on the other side of that news. Something far greater than what was in our plans. You may not understand it, or you may think there's no way this can be good, but in time you will see.


For everything there is a season, and a time for every matter under heaven:

a time to be born, and a time to die;

a time to plant, and a time to pluck up what is planted;

a time to kill, and a time to heal;

a time to break down, and a time to build up;

a time to weep, and a time to laugh;

a time to mourn, and a time to dance;

a time to cast away stones, and a time to gather stones together;

a time to embrace, and a time to refrain from embracing;

a time to seek, and a time to lose;

a time to keep, and a time to cast away;

a time to tear, and a time to sew;

a time to keep silence, and a time to speak;

a time to love, and a time to hate;

a time for war, and a time for peace. (Ecclesiastes 3:1-8)


And we know that for those who love God all things work together for good, for those who are called according to his purpose. (Romans 8:28)


Author and Photo Credit: Summer Hinton

Family Resource: Medical and School Profiles

posted Jan 17, 2016, 2:54 PM by Adel DiOrio

Our Family Resources are  Medical and School Profile Templates.

If you are a parent of a child with spina bifida, you will be asked to recall his/her surgical history, current medication list, equipment, you-name-it at every MRI, clinic, and pre-op meeting.  Not only do our kids have more of these types of meetings, they also often have more history to list...and remember.  Enter the digital age and collaborative Medical and School Profiles facilitated in Google Docs.  

I am not a paid endorser or sales person for Google in any way, shape, or form...but let's face it.  It's ubiquitous.  It's collaborative.  It's easy.  And, a factor near and dear to my own heart...IT'S FREE.  When you sign up for a free Google email address (or Gmail), you also get a free associated Google Drive account.  You can make, edit, share, and access cloud-based documents from anywhere...the emergency room, the pre-op center, or your child's upcoming IEP.  I wish I had done this from the start!

As a gift to each and every one of you...I'm sharing templated to record and easily access your child's information regarding medical history and progress/challenges many areas you may need to address regarding accommodations in a 504 plan or IEP.  As our kids get older, keeping track of all of this can get harder and harder so start one for your child today. Here are the easy steps.   
  1. Log in to your Google account or Gmail.  Don't have one?   Get one.  They are free and easy.  Visit gmail.com to sign up or sign in.
  2. Click this LINK to access the Medical Profile template.  
  3. Click this LINK to access the IEP/504 Profile template. 
When you click each link above, you will be prompted you to make your own copy.  Update them as things occur, as your child's plans change, as he/she reaches new milestones.  No more trying to remember dates and long medical vocabulary on the fly.  Print a copy and keep it in the diaper bag, just in case.  Access the profiles in real time from your smartphone or tablet at the hospital.  Share it with therapists and caseload manager for IEP purposes, as necessary.

I have built one of each for my own son.  I WISH I WOULD HAVE DONE THIS FROM THE START!

Yours in service,
Adel DiOrio, Contributor and Co-Editor in Chief, SpinaBifidaFetalSurgery.com

Featured Family: Sara and Ruth

posted Nov 23, 2015, 4:48 PM by Spina Bifida Fetal Surgery

Our Featured Fetal Surgery Family​ is Sara and Ruth

We are from Texas and had Open Fetal Surgery at University of California, San Francisco (UCSF) in 2010 (Trial Participant). 

Diagnosis: Up until 20 weeks, I had an uneventful pregnancy, with several normal ultrasounds and normal blood tests. During the 20 week ultrasound, she told us it was a GIRL! Our fifth girl, we were very excited! Then she spotted clubbed feet. But then she couldn't get a good measurement on the head. It kept coming back too small. She felt like she should send us over for a level 2 ultrasound next door, and called and got us in there that afternoon. My husband and I went to lunch, prayed, spilled the news to family and friends about the baby being a girl. And headed back. The perinatologist did a level 2 ultrasound, and came in, said, yep, your baby has spina bifida. He showed us the "lemon sign", and the opening on her spine. He wouldn't tell us the level of the opening, only that it was low, and that was good.  He immediately told us about the MOMS trial ­ Management of Myelomeningocele Study (http://www.spinabifidamoms.com), that was studying fetal surgery for spina bifida. 

MOMS Study: Once I could gather myself, I called the number given to me for the MOMS study, and spent over an hour on the phone with the coordinator. She took my history, told me all about spina bifida, and told me about the study. The study was basically looking at comparing an in-­utero surgical closing of the spine to the normal, after birth, surgery. You had to meet certain criteria to qualify, and you could only receive the in­-utero surgery through this trial (at this time period ­ the trial ended in Dec 2010). No other hospital would perform it. She told us what she needed from us, I needed to have an amnio to make sure it was isolated (no other issues with the baby), send her all my records, etc. The surgery needs to be done before 25 weeks 6 days gestation, and since I was already almost 21 weeks, time was short. Once we got all the information to her, she sent it off to be reviewed by an independent group of doctors (ones that do not perform the fetal surgery) for approval or rejection. We also had a fetal mri locally to give us more information about the baby, which was mostly good news (sacral opening, minor brain issues). 

Evaluation: After we made it past the first approval process, and got past some insurance issues, we flew to San Francisco for further evaluation for the trial. We went through an exhausting 2 days of medical tests, including another fetal MRI that was over 3 hours long! You also meet with all the specialists, and they are very clear about the risks involved. The fetal surgery is open, meaning they open your uterus (like they would in a c­section), turn the baby, and perform surgery on the baby through that opening. There is lots of risks to the mother as well as the baby with this surgery. That is why it is still in a medical study. The biggest risk is prematurity. 



Randomization: At the end of it, if you qualify, you then have a choice if you want to continue. We had already decided, if we qualified, that God's plan was for us to continue with the randomization. Once you say "Yes, I want to continue.", they go to a computer, push a button, and it prints out a sheet that either says "Prenatal", or "Postnatal". It was frustrating not having control when we felt this surgery was the best chance for our baby, but we also felt the randomization was a good way to give it up to God. We randomized to Prenatal.  We would have surgery in less than 48 hours. 

Fetal Surgery: That Thursday night we were admitted into the hospital for an iv and fluids. The surgery would be the next morning. That morning was mostly just waiting around for them to be ready for us. Once they came for me it all happened very quickly. I was given a few medicines and an epidural, taken to a different floor, said goodbye to my husband, and was put to sleep. I remember waking up in the operating room afterwards, feeling nauseous, then waking up back in my hospital room, again feeling very nauseous. The surgery went well, they were able to close her back without having to use a skin patch. 

Recovery: They kept me on the epidural for 3 days for pain management to help prevent contractions. Pain was a big issue for me, I ended up with a morphine button, and was too loopy to talk to anyone for about a day. They watch me closely for contractions, and the baby for any signs of distress. After about 5 days, I was discharged to a local Family House (about 10 blocks away). 

Waiting: Since premature labor is a huge risk with that kind of surgery, I was kept on anti­-contraction medicine and weekly high risk ob visits, sonograms, and non­stress tests. Everything continued to look great, but around 31 weeks, I started feeling what I thought was bladder pain. Since everything looked good with the baby and on the sonograms, they sent me to have a renal sonogram. 

Labor: That night, I started having some minor contractions, and around 5 in the morning I noticed some blood. I called up to the hospital and talked to the nurse (at that point I wasn't having contractions), and she recommended I wait and watch, and call back. Around 7 AM, I talked to one of the MOMS nurses, and she sent me straight up to labor and delivery. After about 2 hours, I was admitted, given anti­-contraction medicine through my iv, and also a steroid shot to help the baby's lungs develop in case they couldn't stop the labor. I wasn't worried, everyone felt that Matt didn't have to rush to fly up here. I felt like they would stop it, and I would be out of the hospital in a day or two. Well, around 11 PM that night, my water broke, and things got very serious. Since my uterus had a fresh scar on it from the fetal surgery, there is a high risk of rupture with continued labor. 

Delivery: At 1:50 AM, on Thursday July 22nd, my sweet baby Ruth was born via c­-section at 31 weeks 4 days gestation, weighing only 3 lbs 15 oz, and 16 inches long. She needed CPAP to start her breathing, but was quickly weaned off and needed no help. 

NICU: The NICU experience was by far one the hardest times in my life. Ruth was doing very well, but being so premature, she needed to overcome some apnea issues, as well as learn to suck (eat). I was by her side for almost every feeding, walking the 10 blocks to and from the hospital several times a day, even when I was still recovering from the c-section. Matt went back home to take care of our other children, when she was about 1 week old. 

Discharge: When she was about 3 weeks old, they decided she was almost ready to leave. They scheduled her MRI (part of the MOMS trial), and weaned her off the ng tube (feeding tube down her nose). We were all set for discharge on Thursday morning, when a urine culture came back showing she had a UTI. So, an iv was placed, and iv antibiotics given for a couple days, and she was discharged on that Saturday with oral antibiotic. She was 4 weeks 2 days old. We had to stay in San Francisco until the following week to have one more test, and urodynamics study to test the function of her bladder. Ruth and I flew home to Texas that Wednesday, and Ruth met her sisters for the first time at 1 month old. She is a blessing in our lives, and we are so glad to have her home. 

Mobility: Mobility wise, she met most of her milestones on time! Sat up, crawled, and even walked behind toys. She received her first walker at about 12 months old, we borrowed from her PT and also a friend a couple different ones to find the one that worked best for her. Ruth received her first AFO's (ankle­ foot orthotics) at about 18 months old. At 20 months old she stopped using the walker and started taking independent steps. Now at 5 years old, she can independently walk, run, jump, dance, and even ride a bike! She wears AFO's for stability, and uses a wheelchair for long distances (instead of a stroller) or fun wheelchair sports like WCMX! Ruth’s lesion is at level L4. 

Ruth enjoys playing with her sisters, anything creative (coloring, painting, building), riding bikes, WCMX (wheelchair motocross), and dancing. 
Ruth's interventions for hydrocephalus: ETV (Endoscopic Third Ventriculostomy). 
Ruth's current mobility equipment: Wheelchair, Orthotics (SMOs, AFOs, KAFOs, etc.) 
Ruth's other health complications associated with spina bifida: Clubfoot, Neurogenic Bladder/Bowel 

Additional Information: Over the last 5 years, besides the fetal surgery and NICU stay, Ruth hasn't had too much medically other than just a lot of appointments. For her clubfeet ­ she received serial castings at 3­6 months old, and at 4 years old she had a surgery to help one of her feet be in a better position. For her back and brain, she received the ETV surgery for hydrocephalus at 10 months old, and so far (at 5 years old), nothing else. She also had several tests for her kidneys and bladder, and has continued cathing. She struggled with UTI's her 1st year until we found the right medicine. At 4 years old she had a minor procedure to stop reflux into her kidney. 

It is really scary to receive this diagnosis. It seems like so much to ask of you and your child. Your child with SB will have challenges, but they will also have joy, happiness, fun, LOVE, and hope! My daughter is more like her sisters than she is different. We do not see spina bifida, we only see Ruth, our spunky, sharp, determined little girl that loves life! Do not listen to worst case scenarios, especially from OB's and other prenatal doctors, because they are not spina bifida experts. The best doctor to talk to regarding your child's specific diagnosis is a neurosurgeon, because they DO treat people living with SB! Ruth’s Blog: www.ruths­story.com

Featured Family: Erica and Jackson

posted Nov 14, 2015, 11:44 AM by Spina Bifida Fetal Surgery   [ updated Nov 14, 2015, 12:27 PM ]

Our Featured Fetal Surgery Family​ is Erica and Jackson.


We are from Michigan and had open fetal surgery at C.S. Mott Children's (University of Michigan) in 2015 
(Post Trial). We learned of Jackson diagnosis at our 19 week anatomy scan. The OBGYN, gave us horrible outdated information with a bleak prognosis. We were devastated. I went home numb but quickly got online and scoured the internet for all the information I could find. Some information was better than others. We followed up with a maternal fetal medicine (MFM) specialist from a larger hospital, and he gave us a different yet still bleak prognosis. At that point we asked to be referred to the University of Michigan where they had just started offering fetal surgery for spina bifida. We went for the assessment, met all the specialists and waited to find out if we were candidates. While waiting I connected with some of the best people who had gone through the process. With their understanding, insight and guidance, we were 100% sure that if we were eligible we would have the surgery. 

One day away from the deadline of 26 weeks, Jackson and I underwent fetal surgery. Jackson did amazing! He snuggled in until 34 weeks plus 2 days and was born by c-section kicking into the world. He had a short 5 day NICU stay and another 11 days on the pediatric floor to work on feeding issues (preemie-related, not spina bifida). 

My husband Jim, like many of the other dads of newly diagnosed babies, was torn between supporting me and working through his own internal struggle.  He was mourning the loss of the life he had envisioned for our son.  He felt angry and bitter...that is, until he saw Jackson for the first time.  When Jim came to see me in the recovery room, I asked him how Jackson was doing.  His response was, "He's perfect."

 
For moms and dads both, for anyone dealing with a new diagnosis, please know you child will he his or her own version of perfect.  Jackson is the light of our life, our only child and a blessing without measure! He is strong and healthy and just perfect! Jackson’s bony lesion is at level L2-­S5 and his soft tissue opening was from L3-L4. Jackson is a bright, inquisitive little man! He is on track with nearly all his milestones, even though he was born 6 weeks early. He loves to sit up and look around, and the outdoors are his favorite! He loves to snuggle close and read books, and he is a raspberry blowing champion!

Jackson’s interventions for hydrocephalus:  VP shunt.
Jackson’s current mobility equipment: None thus far.

Additional Information: Jackson was diagnosed with hydrocephalus and Chiari II malformation in-utero. His Chiari II reversed after surgery, and he has shown no Chiari symptoms to this point. Though Jackson's hydrocephalus was stable to slow-progressing through seven months of age, he did have a VP shunt placed when his head growth demonstrated no signs of plateauing.  It was a hard decision, but it was the right one.  His lesion level is from L2 down, but he has full function of all his major muscle groups in his legs...all the way to his little feet.


To parents of newly diagnosed babies with spina bifida, "You can do this!"  It's scary. You're going to be sad, then mad, then scared...wash, rinse, repeat. And that so ok! Don't put too much stock into early information you receive unless it is delivered by a pediatric neurosurgeon. Have an evaluation done at a hospital that performs the fetal surgery. You will get the best diagnostics and the most up to date accurate information...even if you choose not to have fetal surgery or are not eligible. You pick the hospital you want to use. Research them. You don't have to go to the one your doctor recommends. There are many here who traveled hundreds, even thousands, of miles to go to the hospital that fit. You are in the driver's seat. They work for you! 

Join the Expecting and Considering Fetal Surgery for Spina Bifida and the Spina Bifida Parents Group now. Ask questions and connect with people who have been where you are. You don't know it yet, but you have an army of supporters just waiting to help you navigate these waters. Some of these "strangers" will end up closer to you than family...trust me! Educate yourself, knowledge is power! 


Lastly...JUST BREATHE...these kiddos are AMAZING!

Jackson’s Blog: https://www.facebook.com/Jacksonjameshopp/posts/754529574644761:0

2015 Faces of Fetal Surgery for Spina Bifida Video RELEASED!

posted Nov 12, 2015, 7:55 AM by Spina Bifida Fetal Surgery   [ updated Nov 14, 2015, 10:05 AM ]

We are very happy to finally release the 2015 Faces of Fetal Surgery for Spina Bifida on behalf of editor Sara Zimmerman​! Featuring 150 families affected by spina bifida that have received fetal surgery, from the early experimental days in 1998 to now all over the world! Life is so beautiful!

Click image to watch or copy and paste this YouTube link: https://youtu.be/gYyT2IBBLQ4
https://youtu.be/gYyT2IBBLQ4

If you like this video, and want to help support further projects, please considering making a tax-deductible donation to 
Redefining Spina Bifida https://fundly.com/redefining-spina-bifida

Fetal Surgery for Spina Bifida, a parent to parent resource: http://www.spinabifidafetalsurgery.com/
Redefining Spina Bifida, non-profit organization. http://www.redefiningspinabifida.com
‪#‎spinabifida‬ ‪#‎redefiningspinabifida‬ ‪#‎spinabifidafetalsurgery‬ ‪#‎fetalsurgery‬ ‪#‎facesoffetalsurgery2015‬ #beyondlimits

Featured Family: Adel and Justin

posted Jul 29, 2015, 7:09 PM by Adel DiOrio   [ updated Jul 30, 2015, 6:48 AM ]

Our Featured Fetal Surgery Family​ is Adel and Justin.


We are from Michigan and had Open Fetal surgery at Children's Hospital of Philadelphia (CHOP) in 2012 (Post Trial). We received our diagnosis at our 19 week ultrasound. It was a Thursday evening, the last appointment of the day. The ultrasound tech got really quiet, excused herself from the room for entirely too long, and returned with my OB who spoke very softly and calmly. She had already run out to the parking lot to stop the maternal fetal medicine specialist who was on her way to the car. The MFM and the OB explained to my husband, my older son (who was just attending to learn the gender of his new sibling), and me what "the fruit signs" were and what spina bifida was. I had some experience as I am a teacher, but my husband had no experience. The only words I could muster were, "It's bad. It's very bad."

We had our amniocentesis the next morning, first thing. We researched and we waited. We called and we waited. It felt like forever, but the amnio came back confirming the diagnosis of an open neural tube defect with no other anomalies. We decided on the Children's Hospital of Philadelphia. Their experience and outcomes spoke for themselves. We headed to Philly the week before Thanksgiving and went through four days of evaluations. Yes, four. I was the first mom to receive this surgery with essential hypertension, and they had to test and control for everything. At the end of day four, we were candidates. We came home, had Thanksgiving dinner, and headed to Philly for, well,­ as long as it would take.

We were scared and overwhelmed, but we had faith and decided this was the best thing we could do for our child. His name is Justin. This was the best thing we could do for Justin ­to give him the best chances for motor function, to avoid the Chiari II malformation, to try to avoid the need for a shunt. We decided that we needed to leave no stone unturned. We had fetal surgery on a chilly November day. It went well, although they did have to resuscitate Justin at the very end of the procedure as his heart rate fell off. Imagine...palpitations on a baby of 1.5 pounds.

Bed rest was not easy. It felt like forever until Justin was born, and in hindsight, it was the blink of an eye. 89 days after his first surgery, Justin was born at 36 weeks and 2 days gestation. We spent three weeks in the NICU overcoming typical preemie issues. Then, we got to take our entire family of four home. Justin’s lesion is at level L2-­L3. 

Justin loves to eat blueberries, throw a baseball with his brother, walk in our neighborhood, eat Italian food, and get into general mischief. He is, after all, a toddler. He likes putting pennies in his piggy bank and tickling his family. He loves to play in water: the lake, the hose, the bath, you name it. He likes Mickey Mouse and Wreck It Ralphand his favorite book is Chicka Chicka, Boom Boom.  

Justin's interventions for hydrocephalus: VP (Ventriculoatrial) Shunt now removed, ETV (Endoscopic Third Ventriculostomy).
Justin's current mobility equipment: Walker, Orthotics (AFOs), Prescription Shoes
Justin's other health complications associated with spina bifida: Tethered Cord, Neurogenic Bladder/Bowel

Additional Information: Justin had a tough run during his first couple of years. He had 13 surgical procedures in total, some of which were grouped onto a single day (totally nine surgery days). He contracted e. Coli meningitis. He had a tethered cord release and had a dermal sinus tract and a dermoid cyst removed. He had a scar revision, and one of the muscles that had to be moved, in fact, died and had to be removed. But, meet the boy. He is resilient, funny, clever, happy, and all boy! 

He lives by two mottos: 
From his team: "Huh, I have never seen that before."
To the world: "Just try to stop me."

If you stumbled upon this site because you are expecting a child with spina bifida, the medical information here may be intimidating. I was intimidated. I still am intimidated. BUT, when you have your baby, regardless of whether fetal surgery is right for you and your family, your baby will be this amazing creature so loved, so perfect. All of this will become your new normal, little by little. You can do this. You can be the parent to your child. He/she will just have his/her idiosyncrasies, just like any child. No child comes with a money back guarantee or an owner's manual. You have the backing of a dynamic community of parents and the greater SB community. We will survive and thrive together.

  


First Blog Post

posted Jul 21, 2015, 3:31 PM by Spina Bifida Fetal Surgery   [ updated Jul 21, 2015, 3:34 PM ]

We are so very excited to have launched the website, Twitter account, and info email this week.  We encourage you to subscribe to this blog to receive timely information, interesting articles, and profiles of families who underwent fetal surgery for spina bifida.  We are proud to be part of this this exciting endeavor of family-to-family support.  Stay tuned for exciting things to come.  If you have suggestions for blog articles, please email info@spinabifidafetalsurgery.com for consideration.

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