STORIES OF HOPE
“But I know, somehow, that only when it is dark enough can you see the stars.”
― Martin Luther King, Jr.
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SAVANNAH GRACE
Here is Savannah Grace's story in her parents' words:
"At 20 weeks, we were told our baby had something wrong. We were told to get in contact with Children's Hospital of Philadelphia (CHOP). A few days later, we were there all day getting test after test done. After the long day, we were taken to a room where we were told our baby had an encephalocele and less than a 10% chance of survival. Of course every doctor suggested termination. We said, "No thanks" and wanted to continue with the pregnancy. We asked our nurse to find out what we were having. She told us it was a girl. So in the weeks following this, we went to many appointments at CHOP and our baby girl was doing everything she was supposed to be doing. I, on the other hand, was an emotional mess! I had everything planned out...she was going to be born via c-section 3 weeks early, as that was the best way to have her born alive and with any chance of survival. I always knew I would be bringing her home, but I did make plans if she didn't make it. I had someone there to take pictures. Someone was there to help explain everything to her little brother. I had all her blankets, her dress, and a teddy her big brother had made her. All through the rest of my pregnancy, her encephalocele never grew any more, and our baby girl was perfect in every way! Her delivery date came...she came out crying and beautiful. She was breathing on her own and had the most perfect coloring to her! They wrapped her encephalocele to protect it and handed her right to her daddy. He brought her over to me and she was making all these sounds and just doing wonderful. I got to hold her as we got wheeled back to my room. We named her Savannah Grace Hope. The next 24 hours were a whirlwind. I got her to nurse twice, but it was so hard due to her encephalocele. Since she was doing amazing, we put her in the NICU where they could make sure she was getting enough to eat . She just did so awesome. She had an MRI done to see if her encephalocele could be fixed, and it could! At a week old, Dr. Heuer took her in for about a 2 to 3 hour surgery, and he came out with the biggest smile! He said he had fixed her up, and it wasn't nearly as bad as they had thought. We still wouldn't know the extent of the damage, but she was alive and thriving. She did so well after surgery that 5 days later, we went home. Once home, her incision was leaking, so we went back to CHOP. She had another surgery to re-close the incision, and they were able to make her head a more normal shape. They also placed a drain, so the leaking wouldn't happen again. Once again, our baby girl rocked that surgery, and we were home again. We had a short stay at home this time. She had developed hydrocephalus and went back into surgery, where they placed a shunt. We went home the next day. All of this was within the first month. She ate and was growing like any other baby. At about 3 months, she started getting therapy to help with her stiff neck. At about 9 months old, her shunt failed, and she had it replaced. Every check up with Dr. Heuer was awesome. He just kept saying he couldn't believe how great she was doing. She didn't walk until she was 2 and has reached all of her milestones, but on her own terms. She has had physical therapy, occupational therapy, and speech therapy for most of her life, and it has helped her thrive. She is 4 now and has a brace for her left foot that she wears. She is having a hard time potty training, and she definitely learns things slower, but she is doing it! She went to preschool last year 3 half-days a week and just thrived. It hasn't been easy, but it has been worth it! I will keep fighting for anything and everything that will help her in life! I know everyone's story is different, but I pray that all the babies with the encephalocele diagnosis could end like ours."
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ARIADNE
Diagnosis: Occipital Encephalocele, Chiari Malformation, Microcephaly, Hydrocephalus, Legally Blind
This is Ariadne's story in her parents' words:
"After our 20 week ultrasound we discovered there was something wrong with our daughter's head. They originally thought she had a Chiari malformation (Type 3) and that she likely wouldn't survive pregnancy or birth. We were sent to McMaster Children's Hospital in Hamilton, Ontario. After some testing there, we were told that she actually had an encephalocele, but she would still have no quality of life. We chose to continue the pregnancy and have whatever time we could with her. Our neuro team was constantly giving us hope, despite our other doctors being "doom and gloom". Ariadne was born on March 9th, 2018 via c-section at 38.5 weeks. Her cele ruptured on the way out, and she had emergency surgery for repair/removal at a couple hours old. Dead brain tissue was removed. She spent 10 days in the NICU. The next few months went well. She started showing vision issues, but she was progressing. At 6 months, she started regressing, but we just figured she was being lazy because she was constantly getting sick. At 11 months, she had a follow-up MRI, where they discovered she had hydrocephalus. Two weeks later, she had her second brain surgery for her shunt placement. Through all of this, we had been doing testing for her vision. She has small, pale optic nerves, with very little signal getting to the brain. She has been deemed legally blind with no light perception (no diagnosis). Since the shunt placement, she has been catching up and is doing very well."
*** Ariadne's mom added that they are currently working on training to walk with a walker!***
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BARRY
Diagnosis: Encephalocele
Here is Barry's story in his Mother's words: "This day every year, I spend time on the internet researching encephalocele and looking at gofundme pages which is how I happened upon your website. I think it is because after 13 years, I want to remain embedded in the miracle of Barry's healing. On September 20, 2007, Barry received his healing. To look at him now, as tall as I am, and playing starting cornerback for his middle school football team, it's easy to allow the memories, challenges and struggles, to slip from my mind. But never will I forget those words, those days, those unknowns... Barry was born on Friday, September 7, 2007. I had great prenatal care, ultrasounds, doctors.... but no one saw it. I've told myself and I believe that it was God's preservation of my mind. After all, I had a one year old to care for and He knows what we need when we need it. It was a routine, planned c-section , and I remember waking up in my room. I thought it was odd that they had not brought Barry in with me. (This part of the story is what was told by my mom. We were so excited to see our first grandboy through the nursery window. But we were surprised to see the doctors in there with him. Doctors usually don't stick around for the bath and cleaning. I looked at my husband to see if he thought that was abnormal. I could see the concern in his face. The doctor kept flipping Barry over and looking at the back of his head. He would rub and touch all over his head. Then he would flip him back over and look at his head and check his body. He probably did this 5 or 6 times before leaving the nursery.) A while after my family came in and shared my concern that the baby had not been brought to me. A short time later, a nurse rolled Barry in and told me that he had what looked like a blister on the back of his head and would need to be taken for further testing. For a brief moment, I basked in seeing my cute baby boy and then he was taken again for what seemed like hours. A while later, a quiet sleeping baby was brought back into the room followed by a doctor who identified himself as Dr. Mubarack. He stood close to the hospital bassinet as he delivered news that I only caught bits and pieces of... "No functionality", "If he lives", "low chance of survival", "severe developmental delays", "80-90% mortality rate", "pediatric neurosurgeon"....I remember thinking it was the medication they had given me that made the room spin so fast. He wasn't talking about my baby. My baby was sleeping soundly and had all 10 fingers and 10 toes and looked absolutely normal. He was in the wrong room. I came out of shock to the sound of crying all around from my husband and parents and mother in law. I remember looking at everyone with disbelief and hearing my mom say to the doctor, "What do we do?" The doctor responded, "I'm not sure what families do when they receive bad news, but in my family we hug". Emotion finally plowed me over as I watched this stranger comforting my family after giving us the worst news possible. I got out of the bed and held Barry like I would never let him go. How could this be true, be right? The next two days were a complete blur. The internet had very little information to help me sort through what I was trying to find out. I had very little information to help me even search. By Monday, we were released from the hospital and sent to an appointment with the only pediatric neurosurgeon in South Carolina at the time. My husband had started a new job so my mom went with me. She was paper and pen in hand and I was trying to reconnect my mind to my body. He looked at Barry and had already reviewed his case. He was very stoic and very matter of fact. He stated only facts. Barry was diagnosed with occipital encephalocele. He would undergo brain surgery in 2 weeks (at birth weight) to repair the skull. Mortality was 90% in the cases he had seen. If he could repair it, it would be likely Barry would be blind, wheelchair bound and not have the quality of life we had planned or hoped for. I must have asked a million questions or one question a million ways and his response was always the same- Barry's prognosis was less than bleak and we should enjoy the time we have with him. If ever I have begged, borrowed and pleaded with someone, it was God. I needed my baby boy. I would do anything to keep him. His surgery was the morning of Thursday, September 20th. At 1 am, Barry projectile vomited like something from a scary movie. I started to panic that things were going bad before we even got started. My mom reminded me that it was probably because I overfed him since he couldn't eat for hours before the surgery and I was determined that he wouldn't be hungry. The surgery was set to take 5 hours. We waited with bleeding fingertips for each hour's check in from the surgical team. After almost 8 hours, we were finally brought in to see our boy. He was in a screaming fit of hunger. The nurse assured me that it was a good sign and not to be worried about all the machines and tubes and beeps. He drank sugar water like a ravenous little man and within a few hours, he was drinking Pedialyte and finally my breast milk. The doctor told us that the surgery lasted longer because there were quite a few brain anomalies that he had to maneuver, but the next few hours, days and weeks would provide telling signs. He prepared us that he may be back in surgery sooner than later as they were watching for fluid on his brain. Barry made such swift progress that we were released from the hospital 3 days later. Over the next few weeks and months, we took Barry to doctor's appointments and were met with amazement at the milestones he reached and progress he made. At his 2 year neurosurgeon check up, the surgeon looked at me with his hands in the air and said, "I can only ever speak from factual, research based information- I don't know what to say because he has defied all of the medical prognosis I have. I am going to release him." Since then, there have been challenges along the way- suspected color blindness, speech therapy, ADHD, being a normal teenager... But, 13 years later, when I look at my boy, I want to wrap myself in the reminder that he is God's miracle and of God's amazing healing power."
MASON
Here is Mason's story in his mother's words.
"Mason was my surprise! He was my 4th pregnancy and 5th child. I gave birth to 4 healthy girls before mason. I found out around 20 weeks my baby would be born with a rare birth defect called an "Encephalocele ". He also had cerebral ventriculomegaly. I was asked to terminate my pregnancy. I was told my son might not live, or he would die shorty after birth, or if he survived, he would not be able to do a lot himself including being able to walk, talk, play and more. We chose life! He let me know he wanted to live!
Mason was born at 37 weeks at CHOP. Dr. Heuer, his team and many others helped planned his birth before Mason was born. Mason entered this world through C-section. He was a beautiful baby. Mason needed oxygen for a little bit and a feeding tube for a day or two then was eating from a bottle. He was diagnosed with cerebral ventriculomegaly, bilateral dacryocystoceles (left worse than right), subependymal gray matter heterotopia, encephalocele, bifid uvula, amblyopia in both eyes and Global developmental delays. He was and is absolutely perfect, 10 fingers,10 toes and a head full of hair! April 9th, Mason had ETV surgery. We went home on April 12th! We planned surgery to remove Encephalocele in 3 weeks.
My son came home April 12th, 2021. Mason was doing great. He was seen by his PCP on April 21st. She took his vitals, checked his stitching and everything looked great. April 22nd Mason had a bad seizure. We got into the car to head to the hospital, he had another seizure and went into cardiac arrest. I called 911 as I gave my son CPR until firefighters and EMS arrived. We got to the hospital and we found out that Mason developed Enterococcus faecalis (bacterial meningitis) where he had his Etv surgery. Mason was having 70 seizures a day! He had some Derby and pus in his ventricle from his ETV surgery. He had a PICC line placed and had 6 weeks of antibiotics and had to be put on heavy medicine to control his seizures. He then developed hydrocephalus. Mason had a VP shunt placed after infection was cleared at 4 months old. Doctors are so surprised by him. Mason is a fighter and he wants to live !!!
Mason is Now 23 months Now He takes keppra 2 days .Mason is doing amazing. He is my warrior !! He's had 3 brain surgeries and you would never even be able to tell if I did not tell you.
As of today he is diagnosed with epilepsy seizures, Hydrocephalus, amblyopia in both eye ( he wears glasses) Global developmental delay, small heart murmur and he has a VP shunt
Mason does have a NG tube but. he eats and drinks by mouth. His NG tube is only to help with calories. His chart says "failure to thrive". He's a little underweight and he's a little on the shorter side but, he's perfect. He does not fully talk yet. He just started practicing. Mason points and makes sound to let us know what he wants. Mason took his 1st step at 19 months. Mason loves to sing and dance. Mason is a very happy boy. He loves his 4 sister's and his family. Mason love's his life. I am so proud of this little warrior.
*Blessed*
