Millie
At 20 weeks pregnant, Simon and Alyssa Anderson found out their daughter, Millie, had Spina Bifida. They made the decision to go to the Chicago Institute for Fetal Health, and pursue Fetal Surgery, performing in utero closure surgery on Millie’s Spine.
Everleigh
Everleigh was born on March 6, 2023 with wavy, blonde hair and dark blue eyes. She spent the first 2 months in the NICU. In utero she was diagnosed with an unbalanced translocation of her chromosomes 6 and 9, hydrocephalus, and Dandy Walker Malformation along with several other diagnoses.
Ella
Ella is a 4.5-year-old sassy, strong-willed, loving child. At 20 weeks, we discovered she had the most severe form of spina bifida. With little time to decide, we chose in-utero surgery, hoping to give Ella the best chance for physical success. However, at 25 weeks, complications arose, and Ella was delivered at just 1 lb 12 oz. Doctors said she wouldn’t survive and if she did, she wouldn’t have any quality of life.
Ruby On June 20, 2009, our girl was born. I saw her very briefly and she was taken immediately to the NICU at Children’s Memorial. She had her shunt placed on day 3 of life. Everyone said she was a fighter and she sure proved it when she was ready to come home after day 6, instead of the anticipated 30 days.
Daniele
Daniele and her twin sister Patricia were born very early at 26 weeks. Daniele weighed 2.3lbs and her sister 1.7lbs. Patricia gained her angel wings 2 days after birth. Daniele was our little fighter!
Daniele spent the next 3 months in the NICU on and off a ventilator for the first month. There were many ups and downs during this time. Finally on January 16, 2007 (her actual due date) we were able to take her home along with oxygen tanks and heart monitors. But our Nellie was home nonetheless!
Ethan 
We adopted Ethan when he was 3 days-old. At age 3, we knew there was something wrong with Ethan because he wasn’t running or jumping like his peers. He had balance issues, tripped, and fell a lot. It took a couple of years of endless doctor’s appointments and tests to finally get an official diagnosis of Giant Axonal Neuropathy (GAN) at the age of 6.
Aaron
Aaron was diagnosed in utero with Spina Bifida. He is followed regularly by 5 pediatric specialties at Lurie Children’s Hospital of Chicago. Since birth he has had 15 surgeries along with numerous appointments with imaging (x-rays, CT scans and MRI), the lab, various procedures and doctor’s visits.
Finley
Fin arrived very unexpectedly, 6 weeks premature. At three weeks old, his liver and the ventricles in his
brain were found to be swollen and we were told, “Your baby has a serious infection and has extensive hydrocephalus and we are extremely concerned about him.’’ They also told us, ‘’there was a high risk of him having damage to his brain’’. I will never forget those fateful words.
Fionna
On June 1, 2004 our princess Fionna was born. I was only able to spend 3 hours with her in the delivery room as she needed surgery to treat Pulmonary Stenosis of her heart. After several more surgeries and 3 months in the NICU, our Fionna was able to come home. She was on a feeding tube, needed intensive therapies 7 days a week, and required round the clock care. A short time later, Fionna was diagnosed with Angleman Syndrome, which among other things causes neurological conditions and ongoing seizures. The challenges that lay ahead were many.
Alexandria
Alexandria is a 4 year old girl who was diagnosed at 10 months with a brain tumor. She was started on chemotherapy. At 18 months she had a tumor resection, developed hydrocephalus and suffered from a stroke. After multiple shunt surgeries she was put on another intense round of chemo and suffered another stroke at 21 months.
Matt
Matt was born three months prematurely. During his eight-month stay in the NICU, he contracted an infection which created a blockage between the third and fourth ventricles in his brain – Hydrocephalus. His first shunt was placed when he was six months old and since then he has had five shunt revisions.
Zachary
Zachary was born on January 21, 2000 6 weeks premature and was immediately transferred to Children’s Memorial Hospital for brain surgery to be treated for Hydrocephalus.
Jacob
When he was almost four, Jacob was diagnosed with Hydrocephalus and a Hypothalamic Glioma. A tumor–the size of a large walnut–had decided to grow in the most sensitive area of Jacob’s brain. Due to where the tumor is placed, it could not be removed surgically. Also, the natural flow of Cerebrospinal Fluid was completely blocked off, resulting in a very complicated case of Hydrocephalus.
Luke
Luke Perry was born March 6, 2006. He was taken quickly to the NICU, so it wasn’t until hours after his birth that I got my first good look at our new son. The next week was a surreal rainstorm of meeting many new doctors, each with news of a different anomaly Luke had or explanation of a surgery he would need. It was soon discovered Luke had a genetic disorder referred to as a trisomy 8 mosaicism, which means instead of having a pair of 8th chromosomes, he has an extra copy in some of his body cells. Surgery was able to repair his kidneys, his eyes, and his malformed bowels. What it couldn’t fix was the agenesis of the corpus callosum. The corpus callosum is the area in the center of your brain which connects the right and left hemispheres. That section of Luke’s brain did not develop. Some people live their whole life with this condition and never know they have it, and others are significantly impaired. Luke’s genetic disorder is very rare so doctors didn’t know what to his future held. We were told to take him home and give him lots of love. Bad news would show itself quickly, good news will be slow.
Matthew
Matthew was born on December 21, 2006. At six months of age, we noticed Matthew was not developing physical skills at a typical rate. Our pediatrician recommended that we consult with a pediatric neurologist… and so began our journey.
Adam
Adam was born in September 2002 after a very typical and active pregnancy. Adam had his first ambulance ride at an hour old and his first surgery within twenty-four hours. Adam was born with a form of Spina Bifida, called myelomeningocele, a birth defect in which a lump of fat from under the skin extends through the spinal column and attaches to the spinal cord, tethering the cord to overlying skin resulting in neurological deficiencies. In Adam’s case, his lower extremities were greatly affected causing him to have difficulty walking and a need for braces to help improve his gait pattern and endurance. In addition his Spina Bifida caused some of his organs to become paralyzed, which impacts his daily life.
Declan
Declan was born on June 20, 2010 at 24 weeks and 4 days, weighing only 1 lb, 14 oz. Due to Declan’s extreme prematurity, he has had to endure and overcome numerous life threatening conditions and spent six months in the Neonatal Intensive Care Unit (“NICU”) before he finally came home in December, 2010. One of the most critical conditions Declan faced at birth was an intravenous hemorrhage (“IVH”), or bleeding on his brain. As a result of the IVH, Declan developed Hydrocephalus.
Maureen
Maureen, named after her grandmothers, was born on September 22, 2006. She was born with wisps of red hair, deep blue eyes, chubby cheeks and Hydrocephalus, a fatal condition if not treated.