“Lucy was born at 39 weeks and 6 days after a smooth, healthy pregnancy. Mom had precipitous labor and after Lucy was born she had a rash called petechiae on the top of her head the nurses are doctors said it was because labor was so quick. Lucy’s head was also small but no one was concerned. 

 When Lucy was 12 days old her state newborn blood screening came back positive for Congenital CMV. Lucy is lucky to live in Minnesota, one of the only states that screens every newborn for cmv. In most other states, cmv is only tested for if baby fails their newborn hearing screen or has other obvious symptoms, but Lucy was showing none of these. Mom and dad had never heard of cmv before but the doctors assured us that Lucy was asymptomatic (even though she had both petechiae and a small head both cmv symptoms) and we’d just have to monitor her hearing as she got older but we’d know more once initial testing was done. Initial screenings came back for a head ultrasound, hearing, vision, and liver and kidney tests and it was confirmed that Lucy had cmv. Since Lucy’s diagnosis we’ve learned that she has enlarged ventricles, brain cysts, white matter brain abnormalities, brain calcifications, and a tiny PFO. Unfortunately with these findings there is more to worry about than hearing loss. Lucy stays quite busy with appointments and continues to be followed closely by early intervention (biweekly), infectious disease (monthly), neurosurgery (every 3 months), neurology (every 2 months), audiology (every 3 months), ophthalmology, cranio sacral therapy, and physical therapy. So far Lucy is doing well and her outcome is still very unknown as we will have to wait and see how cmv has impacted her brain function, she was quite sleepy her first month and is a little delayed with motor skills but is learning and growing every day. She’s a very smiley baby and loves when mom, dad and big brother Henry talk to her we all love her big smiles too.” - Lucy’s Super Mama

 Jack has mixed tone quadriplegic cerebral palsy, epilepsy, dystonia and he is GJtube (a tube that’s inserted into the abdomen into the stomach and small intestine for feeding and venting the stomach) dependent. 

He was born at 33 weeks and 5 days by emergency C-section due to failing a stress test.

I remember lying on the table waiting for my precious boy to cry so I would know he made it safely, he didn’t. They rushed him away. I didn’t get to see Jack for 24 hours. 

We spent almost three months in NICU. 

When he was sent home from the NICU I couldn’t figure out why he was crying so much.  I kept taking him in repeatedly for them to tell me there was nothing to worry about until I demanded tests. I found out he had epilepsy at just 6 months old.  He was having about 12-17 seizures an hour.  He is currently on 3-4 different seizure medications and that seems to be working for him.

Jack is now 16 months old and changes daily. I figure out what it is he needs by movements and certain sounds… only a mother would know. 

But boy, have we come so far! I am the best advocate for Jack, and I’m so proud of him and myself. 

Every day is difficult, but we choose to the ride the waves. I’ll always choose Jack. 

-Kinsey (Jack’s Super Mama)

Hi my name is River. When my mommy was pregnant her doctor said that the genetic testing and ultrasounds all looked good and she and my daddy and my three big brothers were all so excited to meet me. At 41 weeks my mommy made a very difficult decision to deliver me via c section because I was measuring very large and she wanted me to arrive safely. I was born on February 27th and everything went smoothly but my mom soon  noticed that my eyes were very jumpy. I was transfered to the NICU to be monitored for seizures and had a CT scan and an MRI of my brain. On February 29th, which happens to be Rare Disease Day, the doctors told my parents that I was born with two brain abnormalities, dysgenesis of the corpus callosum and bilateral polymicrogyria (PMG). After doing genetic testing my parents learned that I was born with a very rare genetic disorder called MPPH Syndrome.

Because my brain developed differently some things are more difficult for me so I see a physical therapist and a feeding therapist. I have also seen eight different specialists including neurology, opthomology, and endocrinology. Because of the PMG it's very likely that I will develop seizures and be globally delayed and on top of this I also have congenital staphyloma so I'm severely visually impaired. This is all very scary for my family and a lot of things about my future are unknown but I'm just happy to be surrounded by so many people who love me and think I'm so strong and sweet. My parents are honored to be able to share my story and have the support of the Brady Wynn Foundation.

 Madelyn was born at 38 weeks on June 2, 2024, via an emergency C-section due to placental abruption. She was resuscitated in the operating room and then underwent therapeutic hypothermia, during which her core temperature was lowered to 91-92°F for 72 hours to treat hypoxic-ischemic encephalopathy (HIE).

 On her second day, Madelyn experienced a seizure as a result of her HIE. While in the NICU, she underwent a brain ultrasound, brain MRI, multiple EEGs, and multiple video swallow studies. She spent 29 days in the NICU, learning to breathe on her own and feed from a bottle due to low muscle tone in her neck and core regions. 

 Since coming home, Madelyn has had weekly nursing, physical, occupational, and feeding therapy sessions. We are still early in her journey and learning the full extent of her HIE diagnosis and the challenges it may present. She has upcoming specialist appointments with neurology and ENT to determine further testing and treatment.

 Madelyn is deeply loved by her mom, dad, and her older brothers, Logan and Benjamin, as well as her older sister, Hannah. She works hard every day in her therapy sessions, striving to catch up to her developmental milestones. Madelyn is a fighter and has already made incredible strides in her first three months.

Nora was born at 37 weeks after a seemingly smooth pregnancy, aside from being diagnosed with IUGR (Intrauterine Growth Restriction) around 34 weeks. At birth we noticed she had a smaller than usual head and she failed her newborn hearing screening which prompted the hospital to run some tests in order to determine the cause. She came back positive for congenital cytomegalovirus. We were incredibly shocked by this result as we’d never even heard of this virus before and did not know the risks it posed to our baby girl.

She is now almost 8 months old and since her CMV diagnosis we have learned she has mild hearing loss in her left ear which she uses a hearing aid for and profound loss in the right which she will eventually have a cochlear implant for. She has microcephaly, bilateral PMG (disorder affecting the cortex causing excessive cortical folding of the brain), brain calcifications, and cerebral palsy. She is high risk for epilepsy and also struggles with feeding.

We have a very full schedule between all of her specialist appointments, weekly PT/OT/ST, and finding the time for her big sister Hadley! We are very excited to have found the Brady Wynn Foundation and hope to connect with other families who have gone through similar experiences for support and encouragement as we navigate this new path in our lives. -Nora’s Super Family

After two abnormal ultrasounds at 20 weeks and 24 weeks, I was referred to MFM. They pointed out a small head circumference and brain abnormalities (enlarged ventricles, calcifications, and a cyst); an amnio would ultimately confirm ccmv. At 32 weeks I needed an intrauterine transfusion for blood and platelets due to severe anemia. Our beautiful ccmv baby Harper was born 9/14/23 at 37wks weighing 5 lbs 11oz.

Today Harper is 9.5 months old. We are up to 14 lbs 9 oz. She has microcephaly, cerebral palsy, CVI (cortical visual impairment), dysplasia, was diagnosed with epilepsy after having her first seizure around 7 weeks. She showed mild hearing loss on her last sedated hearing check but could be due to fluid in her ears. They are keeping a close eye on her as there’s a 75% chance she will have hearing loss to some degree.

We are plugged in with all the right specialists at the hospital (cp specialist, neuro dev, neuro surgery, ent, nutritionist, ophthalmology, infectious disease, etc) and have weekly feeding therapy/OT/PT. It’s been a lot to manage but we are thankful for all the expertise.

Would love to connect with other parents facing similar challenges as we learn to navigate ccmv. -Harper’s Super Mama

Hi I’m Ivy.

I have Alobar Holoprosencephaly- which sadly is the worst type of holoprosencephaly. My brain didn’t form correctly in utero. My forebrain failed to part into the right and left hemispheres. Doctors gave my family options- but they wanted to meet me- and why wouldn’t they, I’m adorable.

I currently see neurology, an endocrine team, a dietitian, my regular pediatrician, and palliative care. I was born with a cleft lip, but doctors are hoping I can get surgery to fix this in fall. I sleep a lot because being a growing baby is hard work and this helps my mama believe I am comfortable.

Barron warned of his arrival at 32 weeks and was born 6 weeks early at 34 weeks. Barron experienced hyperbilirubinemia shortly after birth requiring constant phototherapy, IV therapy, and a blood exchange transfusion within the 24 hours after his birth. Even after the exchange transfusion, he needed another round of constant phototherapy and IV therapy before his bilirubin levels were at a safe level. Once his levels normalized after a few long days, he was diagnosed with a hypothalamic hamartoma and arachnoid cyst. The hamartoma is a cluster of cells that did not develop properly, they are living cells with no function. Initial concerns were for seizures and seizure disorders, likely in the form of gelastic seizures, and the potential to experience puberty at an extremely early age. He must be monitored for any potential seizures, early puberty, and signs of hydrocephalus, all while playing catch up from being a premie baby. He has undergone multiple MRIs, and will continue to do so in order to monitor the hamartoma and cyst. Barron is getting much love from his older sister and the rest of his family between regular visits with his medical team that consists of Neurology, Neurosurgery, Endocrinology, Occupational Therapy, Physical Therapy, and his Pediatrician.

At birth Aubrey was diagnosed with Microcephaly, after many test and scans we were given the additional diagnosis of Holoprosencephaly. In Aubrey’s case her midbrain & forebrain did not divide properly into two separate hemispheres. Additionally, Aubrey is also missing her corpus callosum.

With her being 2 months old we are still uncertain as to exactly what this is going to mean for her life long term, and we take it day by day.

Currently she has experienced 1 large seizure and a few smaller seizures. She is on medication for these. She sees ophthalmology, endocrinology, neurology, sleep, Ent, and soon will begin ECI therapies.

All of these diagnosis, doctor appointments, test and upcoming therapies have been extremely scary for all of us. I am thankful to have found the Brady Wynn Foundation who has offered to step in and support us through these beginning months of this journey.

Annaleia has severe brain atrophy and microcephaly with preserved brain stem function. She has seizure like movements, temperature instability, and diabetes insipidus. She has a g-tube because of difficulty eating after birth but now is taking medicine, formula, and baby purées by mouth with g-tube only as needed. She is 16lbs and gaining more and more everyday. She is receiving physical and occupational therapy to stimulate her brain. Doctors said we may have a short life span but she is proving doctors wrong as time goes on!

Oaklen has been diagnosed with a very rare genetic disorder. There are only 10 other people in the world that are known to have this disorder. Because of this small number, there is very little known about it. What we do know is that Oaklen is looking at a life of developmental delays, motor delays, intellectual disability, seizures, language delays, and physical impairments due to the genetic defect and brain damage this has caused. His seizures can be managed with medication but there is no treatment for this genetic disorder. A brain MRI revealed some serious abnormalities in his brain. Specifically, there are many large areas of his brain that have lost their mass and are therefore damaged and/or missing entirely.

Joelle has Dandy Walker Malformation, a couple chromosomal abnormalities, small for her gestational age, a couple heart defects as well as hydrocephalus which caused her to undergo 2 brain surgeries. She also had a G-tube placed before discharging due to feeding intolerance. Joelle seems to be doing well and slowly gaining weight each day. We are doing our best to keep her as healthy as possible, especially with her conditions during this time of year. We don’t know what the future holds for Joelle, but we know that she is one of the most loved little girls out there and one of the strongest babies there is.

At 20 months old, Calli had a 5 cm tumor removed from cerebellum of her brain. She is currently completing her first cycle of high-dose chemotherapy treatment to make sure the tumor, a malignant medulloblastoma, does not return. She will spend one week in the hospital doing this for 3 cycles followed by 3 stem cell transplants, each requiring 2-3 week hospital stays. Calli is doing incredibly well considering the circumstances. She has since obtained most of what she knew aside from gross motor (like walking) which is due to pretty severe ataxia and tremors she is still experiencing. She is expected to walk again with therapy and time.

Lexi was diagnosed with congenital CMV, and as a result she has hearing loss in both ears (right needs a cochlear implant), infantile spasms started at one month old (currently controlled), epilepsy, microcephaly, and bilateral PMG.

Hudson has Spina bifida myelomeningocele, a neural tube defect where part of his spinal cord and nerves remain exposed and the spine doesn’t close all the way. He underwent surgery less than 48 hours after birth to repair the opening.

Emmy has Tuberous Sclerosis Complex. She has refractory epilepsy, epileptic encephalopathy, clusters of tumors in her brain, a rhabdomyoma on her heart, WPW arrhythmia and severe vision impairment. Emmy has had a surgery to receive a shunt to help reduce pressure in her head. Doctor’s at this time believe Emmy is not a candidate for surgery, which could greatly reduce her seizures. We need to send Emmy and her family our love to help Emmy get through this.

Willow was born with SMA, Spinal Muscular Atrophy. Up until 2018 there was nothing that could be done and babies passed away by the age of 2. There is now a gene therapy that is showing remarkable results. Willow received this therapy and is thriving.

 Leia started having Grand Mal seizures (loss of consciousness and violent muscle contractions) 2 days after birth. Leia has numerous battles with breakthrough seizures even while being on medications. She is on two different medications to help manage her seizures.

Charlee has Tuberous Sclerosis Complex which causes tumors and cysts to grow in the brain, spinal cord, nerves, eyes, lungs, heart, kidney, and skin. Charlee has had two brain surgeries that will hopefully be able to reduce the amount of seizures she has due to the number of tumors in her brain.

 Garnet was born at 32 weeks. He was without oxygen for 23 minutes during birth and was diagnosed with Hypoxic Ischemic Encephalopathy (HIE), epilepsy, hypotonia, hypertonia, cerebral Palsy, Dystonia, and Lennox-Gastaut Syndrome.