Autumn :: Child with Spina Bifida

Autumn was diagnosed with Spina Bifida when I was 20 weeks pregnant. Her level is L4-L5, she has a VP shunt, Arnold Chiari II Malformation, central apnea, tracheotomy, and a gastro-button. I am actually nervous to share Autumn's story to new parents learning their child has SB because of all the "complications" that come with her story.

She's in the rare 5% that has severe ACll issues. We did not know this until after her birth. We figured we would have the typical hospital stay with her back closure & shunt & then home to do all the things that come along with SB like cathing, therapy, etc. During her first week of life she would stop breathing & we learned she would need a trach & ventilator to keep her alive & get her home. After a 4 month hosptal stay, she was finally able to come home. Even though my fears of the "worst case scenerio" came true they aren't what I expected. I have a 3 year old who can not walk or talk, can't eat by mouth, needs a breathing machine to keep her alive while she sleeps, & is developmentally like a 12 month old. This may sound sad or depressing but it's the COMPLETE opposite. She may do things differently than the average child but she finds a way to communicate to us without words and seems more "normal" than not. Autumn can army crawl all over the place, he uses her wheelchair to get into things and pop wheelies. She LOVES to watch TV & look through books. My daughter is my hero. She's my inspiration. She has spunk personality. She is strong-willed & stubborn just like her momma. She is the HAPPIEST little girl & you will rarely EVER see her cry. My worst fears about SB turned out to be my greatest blessing. Autumn's life is proof that the worst case scenerios drs give turns out to be not so bad afterall. ;)

To read more about Autumn, visit their family blog at http://lacywilliamsfamily.blogspot.com/

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Kumaka :: Child with Spina Bifida

We found out that our precious son would have Spina Bifida at 19 weeks. We went to that ultrasound to find out the gender of our baby, and we got a whole lot more than we bargained for. We were told our "options" multiple times, until we were more sick about the word termination than the diagnosis. We struggled with finding the understanding of the enormity of what we would be facing. It was so overwhelming. But once he was born, he was perfect in our eyes. He's had quite a few challenges and hurdles to jump over. He's had multiple surgeries, mostly on his feet which are proving to be quite difficult to correct. He is a full time crazy wheelchair boy, but is learning to walk with RGO's. At the moment he is in a spica cast because both of his hips were out of socket and he had bilateral hip surgery to fix that. He's had heel cord lengthening multiple times, as well as a couple of bony procedures on his feet. He has battled pneumonia, and multiple UTI's.


But his sweet spirit, his courageous attitude makes him a warrior. He does not really think he's different. He's five right now and has only once mentioned the fact that he can't walk. He has four brothers who shower attention on him, and he really is a part of the crew. Their friends adore him....and love him and play with him. He is so very awesome.....he amazes me every single day.


He is a huge blessing in our lives and we wouldn't change a thing about him. Our only wish is that he didn't have to go through quite so much...but really that is what makes Kumaka who he is. His full name is Kumakalehua...which is Hawaiian. It means "the Strength or Foundation of the home". He is that for us. We love him more than anything.

Check out their family blog at http://fromamomofboys.blogspot.com/

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Chase :: Child with Spina Bifida

We were told at 22 weeks, after a level 2 ultrasound and an MRI, that our son had Cerebellar Hypoplasia. We were devastated since we were told that having this was rare and that we wouldn’t know the outcome until after he was born.
On October 17th, my OB decided that due to low growth they would prefer to induce and on October 19, 2011 my son Chase was born. My son was born with a Myelomeningocele which explained the hypoplasia. The Myelomeningocele was causing a Chairi II malformation.

Chase had his defect closed on October 20th. He then had an EVD drain placed on October 25th. On November 1st he had his programmable vp shunt placed. He was in and out of the hospital after that for wound issues and shunt issues. He had his first shunt revision January 4th of this year.

He has been doing well so far. His neurosurgeon has turned the pressure down in his shunt from .5 to 1.0 to 1.5 just yesterday. His neurosurgeon is also pleased with the movement of his toes feet and legs; he is pretty ticklish! He has also been hitting his milestones so far. We may be naive, but we think he will show Spina Bifida who’s boss!

This is our blog: littlechasebryan.blogspot.com

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Anika :: Child with Spina Bifida

Anika was born on 10 November 2010 in Nelspruit Mediclinic, Mpumalanga, South Africa with undiagnosed Spina Bifida (Myelomeningocele at L3).


The morning after birth she was taken to Unitas Hospital in Pretoria, Gauteng, by ambulance, where she was admitted to the neonatal intensive care unit. The neurosurgeon, Dr Joachim Mennen, performed an operation on her the following day in order to close the hole in her back from which the spinal cord protruded. The operation was successful and she was kept in ICU for observation. Three days later brain fluid started building up, which caused pressure on the brain (hydrocephalus). Dr Mennen suggested that a third ventriculostomy be performed to open the natural drainage mechanism of the brain.

This operation was unsuccessful and a shunt implant was done 4 days later. The shunt is embedded in the skull and drains brain fluid to the abdomen where it is absorbed. Anika’s diagnosis at this stage was that the minimal movement in her legs was due to reflexes only and that she’ll never have any control over her legs. She was released a week later to recover at home. We started with Babygym, physiotherapy and occupational therapy immediately. After a month of therapy it became evident that she definitely gained partial control over her legs.

In March 2011 her physiotherapist, Marlene Steyn, noticed symptoms of shunt failure and a CT scan was performed in Nelspruit. The neurosurgeon in Nelspruit diagnosed Chiari Malformation and not a shunt failure and suggested that we go to Pretoria for a decompression operation. A MRI scan was done in Pretoria and two specialists confirmed that it’s not Chiari Malformation but that the shunt malfunctioned (a very rare occurrence as they usually just get blocked). A shunt replacement was done on the same day by Dr Mennen.

Back in Nelspruit Anika was progressing well. She managed to sit on her own and roll over. She reached all her milestones on time, except for pulling herself up to a standing position and walking.


In June a series of interventions began in order to straighten her clubfeet. They operated on both her feet and she had to go back to theatre several times to manipulate her feet by using the Ponseti casting method.


At the time that she was 9 months old, she had already been to theatre 10 times and counting. She has been so strong throughout the whole process. Her life is being bombarded with therapy and operations, but Anika smiles all the way to hospital and back. She has really been an inspiration to everybody around her. She also started to move around the floor (her own way of crawling) in October 2011, we are so proud of her! Now in February 2012 she is crawling on her hands and knees, it’s absolutely amazing!



In future she will face more operations and challenges, but in the meanwhile, she is just another little baby girl, full of joy and laughter – who would like to have a fair chance in life... and that’s what we will give to her – every fighting chance we can!



Please visit Anika's website at www.getmegoing.co.za

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Thank you for sharing Anika's story with us Annél! We still need stories, please ADD YOURS!

Logan :: Child with Spina Bifida

Logan was born on October 17th, 2008. He weighed 6 lbs, 5 ounces and was 18 inches long! Logan was born with Spina Bifida: Myelomeningocele, Congenital Hydrocephalus, Chiari II Malformation. He has Asthma, GERD/Reflux and Hydronephrosis of the left kidney. Logan's SB level is at an L5/S1 (Lumbar 5/Sacral 1)...

On the day that Logan was born, my water had broke and I went into labor two & 1/2 weeks before my scheduled csection date, which was on November 4th! We lived almost 3 hours from the hospital that Logan was born at. We drove the 3 hours there. By the time we arrived to the hospital, I had been in labor almost 16 hours and the contractions hurt so much due to back labor.

I remember my husband being able to come into the room after they had laid me down and got me all secured and about 20 minutes later, I vaguely remember hearing the words, "And, we have a baby boy!" I remember waiting in agony for what seemed like forever to hear his little cry. When I finally heard it, tears streamed down my face and I passed out! They brought my husband over to where they brought Logan and let him see Logan's open lesion and then they carefully wrapped his opening and sent him on up to the NICU...

As I was in my room, I later learned that Logan had aspirated meconium and had to receive an NCPAP due to not being able to breathe, once he arrived up to the NICU. Logan went into surgery the next day to have his lesion closed up and after a day or two, I was finally allowed to go up to the NICU to see my precious, momma's boy!! The moment I saw him, lying there on his stomach- unable to move broke my heart but at the same time, I cried tears of joy. He was here and he was alive... (Not many people know this but before Logan was born, we almost lost him due to the Hydrocephalus growing too rapidly in his brain towards the end of my pregnancy.)

Logan spent the next 24 days in the NICU. He had his shunt placed in at one week old and was on & off oxygen.

Logan was released from the hospital on November 9th!! He came home in tow with oxygen and an apnea monitor. We would spend the next 3 months with many sleepness nights for fear that the apnea monitor wouldn't alert us if something went wrong! Logan would quit breathing while he was asleep, so there were nights where I was terrified to even sleep at all... In January 2009, Logan was officially weaned off oxygen!

Logan has had a total of 8 surgeries so far since birth... When he was about 5 months old, I had noticed that he was still breathing really rapidly. It just wasn't normal. So, I trusted my instinct and took him to our family doctor. We were referred to a Pulmonologist. It was then, that it was discovered that Logan had a paralyzed Diaphragm on his right side and would need surgery to have it fixed.


Later that year, Logan was hospitalized with Pneumonia for the first time about a month before his 1st birthday... And, then in February of 2010, he was hospitalized again for Pneumonia and it was then, that his Asthma was discovered.


Logan is now 3 years old and is a complete joy & light in our life!! He is sitting up, he is pushing himself up onto his hand and knees, commando crawls all over the place, rolls everywhere & is now working on his latest milestone: pushing himself up to a sitting position!! If I had known and was able to envision what life would be like as his mother, now almost 3 years later- I would not have been so scared or worried about what he would/would not do or if he'd even thrive or questioned the thought of a wheelchair, braces, catheters, meds or his needed therapies.

Logan is happy & healthy and lights up any room with his silly, little grin!! He doesn't talk, stand or even walk yet but none of that matters or is even an important factor. If I could do it all over again, I would not change a thing!

My blog: Growing from the Obstacles

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Thank you for sharing Logan's story Tiffany! We still need more stories, click here to share yours!