2023 Review and Baby Lexi’s Story
Wow. I cannot believe we are here, at the end of another year. This was a big year for the Brady Wynn Foundation. My husband and I cannot even begin to express the gratitude we have for all of you who continue to support our mission, our dream, and our desire to keep Brady’s memory alive. Our board has grown and changed so much this year and we are forever grateful to everyone who currently serves or has served on our board- this wouldn’t run as smooth as it does without each of them.
Brady Wynn Foundation
Board of Directors and Executive Director
Tyler (treasurer), Tom, Brian (President and Brady’s dad), Mandy (Executive Director and Brady’s mom), Marie (secretary Brady’s grandma), and Jamie.
Our goal for 2023 was to help 6 families. With the help of our sponsors and all the amazing people who donate throughout the year, BWF was able to bypass that goal and provide the Super Parent Support Program to 8 families. Brady Wynn Foundation has been to a family in Alabama, 2 families in Florida, and 5 here in Wisconsin. BWF has touched the lives of infants with Spina bifida, CMV, Spinal Muscular Atrophy, Tuberous Sclerosis Complex, and different life-threatening seizure disorders. This non-profit is still new so please help spread awareness so BWF can find and help more families.
Just a couple beautiful faces from 2023
When this year started, I was nervous as I made the decision to close my massage therapy business in July of 2023 and pour all my focus into this foundation. I am so happy I took that leap. It wouldn’t have been possible with the support of my loving husband who sees my dreams can become a reality and helps me run straight into them instead of running away and continuing to daydream.
One of the many goals of Brady Wynn Foundation is to spread awareness of neurological disorders/complications in infants. I want parents to feel confident when speaking to doctors and never hold in worries because they are told all is ok. I was one of those mamas. I did my best to believe doctors that all was ok because I wanted so desperately for it to be ok, but I knew. I knew something was very wrong with my Brady and I followed my heart. My rainbow baby also had a medical complication, luckily way less severe than Brady’s. When my rainbow was born, I was a stressed mama with massive PTSD from my last baby, staring at that poor baby’s head constantly and I’m glad I did. Logan had craniosynostosis, his sagittal suture in his head (front to back) closed prematurely so his head grew longer and narrower vs round. I pushed for him to see neurology where they did a CT and because of this, Logan was able to get a non-invasive procedure where they removed a strip of bone from his head instead of the much bigger surgery where they actually take a part and restructure the skull. The endoscopic procedure can only be done when infants are very young, because of my mama sense it was caught early.
I am sadly shocked by how much need there is for a foundation like Brady Wynn Foundation. In the US alone approximately 1,500 babies are born with Spina Bifida. www.chop.edu There are between 2,000 and 2,500 babies born who suffer from infantile spasms (a severe seizure disorder associated with developmental delay and regression). www.ncbi.nlm.nih.gov Hypoxic-Ischemic-Encephalopathy (HIE) occurs in approximately 60% of full term live births, 75% or more of these infants will have a severe handicap or worse. https://ufhealth.org/conditions
Please never feel bad advocating or asking for another opinion if you feel something in your gut. It’s doctors’ job to investigate so never feel you are putting them out- you never ever are.
The last family of 2023 found Brady Wynn Foundation in the most special way. Brady had one top notch social worker at Children’s Hospital who helped get the extra insurance needed to sustain life with a medical complex infant and helped get Brady into the many therapies that would help him live his life to best of his ability. That social worker is the same social worker sweet baby Lexi has. Here is Lexi’s story, told by her very own super mama Janae, who also listened to that mama gut.
“At my 20 week anatomy scan my OBGYN was concerned that my placenta was enlarged, she asked that I come back in 4 weeks for another anatomy scan to check on things again. When I came back at 24 weeks pregnant, she said my placenta was still enlarged but wasn't sure why and it seemed that my baby's head was measuring smaller than normal. She did a TORCH test on me to make sure I didn't contract an infection, the main concern being CMV (cytomegalovirus). While I waited for my results, I did a lot of research on what CMV is and that's how I became very familiar with the virus, I wanted to know all I could in case I did have it. My results came back that I had the infection at some point in my life but from the results it was assumed I had contracted it a long time ago, they couldn't actually tell how long ago I had it. The nurses told me I shouldn’t worry and that I should be fine. They referred me to a high risk OBGYN to further investigate what, if anything, may be going on. My high risk OBGYN had me come in every couple weeks to monitor my baby and take measurements. Genetic screening tests were done and nothing was found to be abnormal. My baby's head was still measuring a few weeks behind what the size should have been. Because she couldn't find any real cause, she told me that my baby would most likely just be born with a smaller head, and it'd be fine.
Feeling that everything was going to be okay, I got induced at 38 weeks ready to deliver my healthy 3rd baby. When my baby girl, Lexi, was born my husband and I immediately thought her head size was extremely small, but we were reassured by multiple nurses, hospital pediatrician (twice), my OBGYN, and other medical professionals that she was proportionate and fine. Lexi was born with petechiae(tiny round brown-purple spots), when we questioned it, the nurses said it was just from a fast birth (which later we found out was a symptom of CMV). Lexi had a very high pitch cry/scream - another symptom of CMV. My husband and I then noticed she did not react to noises...she slept through almost everything, she failed her hearing test twice, another major symptom of CMV. But we were told it was probably just fluid in the ear and to wait a couple weeks and follow up again.
We brought Lexi home and just felt something wasn't right, even though so many people at the hospital told us otherwise. At 2 weeks old we mentioned our concerns to her pediatrician and asked for her to test Lexi for CMV. She validated our concerns and agreed to have her tested.
Janae and her beautiful Lexi
Because of Janae’s perseverance, Lexi got the help she needs to live life to the best of her ability
Lexi's results came back positive for CMV.
We quickly met with audiology and infectious disease at Children's Hospital in Milwaukee. The infectious disease doctor went over what CMV was and what it meant for Lexi having this virus. He answered all our questions and helped explain things to us. He later was able to determine that Lexi had congenital CMV, so she had been infected while in utero. He had us start antivirals for Lexi to hopefully slow down or prevent the virus from doing any more damage to Lexi's hearing or vision. The audiologist did an evaluation and ABR test for Lexi's hearing. She informed us that Lexi had mild hearing loss in her left ear and severe hearing loss in her right ear. She then explained that we'd set up more visits to get Lexi hearing aids and discuss a cochlear implant for her right ear. Lexi’s audiologist was one of the first doctors to make us feel that we had someone truly invested in Lexi's situation and praised us for being great parents and advocating for her.
Lexi
Enjoying the snowy WI winter
Lexi was then scheduled to get an MRI done, and her results showed she had severe brain abnormalities caused by the CMV infection. I met with neurology to go over the MRI. The neurologist informed us that Lexi has severe microcephaly and that her MRI showed extensive bilateral generalized polymicrogyria. Lexi would most likely suffer a lot of delays and be at risk for many other health complications. All she could tell us was that we had to wait and see what Lexi was capable of and show us as time went on. At this appointment I also mentioned concerns that I thought Lexi may be having infantile spasms, as I found in my own research this could be possible with her diagnosis and was told that we'd set up a future appointment for EEG monitoring in a few weeks. The neurologist stepped out for a moment- and then, at this visit, Lexi began having what I believed were a cluster of infantile spasms. I took a video, because the doctors were out of the room at this time, and showed the doctor and other neurology team members when they returned to the room. They immediately wanted to admit Lexi for seizure concerns and get her on EEG monitoring. After staying at Children's Hospital Milwaukee for almost a week, it was determined from her EEG findings that she was having infantile spasms. She was put on steroids for 1 month to control her infantile spasms. These were incredibly hard on her as it is a very strong medication, but it did seem to work controlling her infantile spasms. Lexi is now on some anti-seizure medication to help keep any seizures at bay, but she is still at a high risk of developing other forms of seizures or infantile spasms again in the future.
Lexi currently has appointments with audiology, ophthalmology, PT, OT, infectious disease, neurology, and GI. She is almost 5 months old (on December 7) and in a good place with her health right now. We can see her delays already and it’s been hard for me and my husband. But, we enjoy Lexi's adorable smile, cuddles, and love every day. She is such a strong little girl, and I know she will accomplish things in her own way. Her two older sisters adore her and help make sure she’s always involved. We are all blessed to have Lexi in our lives.
When I found out how common this infection is and how it can cause devastating damage to an unborn child, I was shocked. I can't believe that this isn't something that women are automatically tested for before/during pregnancy, or at least informed about. And that newborns aren't screened for CMV. Time is such a crucial factor for whether a child can begin early intervention with therapies and antivirals. If it isn't diagnosed early, a child can go months or years without knowing they have CMV and then by the time they do find out, the infection could have caused a lot of damage already. My daughter wouldn't have gotten the help, medication, or diagnosis if it weren't for us advocating for her.
My husband and I have a goal to take this to legislation and have CMV on the newborn screenings for Wisconsin. We want to make sure other families know about CMV and that babies can be properly diagnosed right away in life. "Congenital Cytomegalovirus, or CMV, is the most common viral infection, and the leading non-genetic cause of hearing loss, that infants are born with in the United States. Every pregnant woman is at risk of acquiring CMV. And only 9% of women know about it." - National CMV Organization website.
Such a strong family.
These are the families you help by donating to Brady Wynn Foundation.
This is the most common virus transmitted from a pregnant woman to her unborn child. Pregnant women should ask to be tested for CMV prior to pregnancy, or if already pregnant, request a test. It's very important that infants be properly diagnosed as soon as possible. If it isn't diagnosed early, the child may miss their window to start antivirals or get early intervention to help prevent more damage and future complications. CMV is not discussed nearly enough for how serious and common it is. We hope that our story with Lexi can bring more awareness about CMV to other families.”
This story is another example of why it is so important to follow your intuition. I am not trying to make anyone overly worried but if you feel something in your gut that won’t go away there is zero harm in pushing a little further.
For 2023, Brady Wynn Foundation, was all about figuring out how to do what we wanted to do and make a solid plan. Now, it’s time to grow. The goal for 2024 is to provide the Super Parent Support Program to 12 families. My goal is to speak to a different group of people at least 12 times this year to spread awareness so BWF can be there, ready to help the next family who needs support. If you know of any groups looking for speakers, please send me their information or feel free to share mine. Mandy@bradywynnfoundation.org. I am in incredible awe of how many good people are out there ready to help! With that help, Brady Wynn Foundation can make sure families going through the unimaginable can get the support needed to sustain this new way of life and know they are not in this alone.
As always, you are strong, you are loved, and you are AMAZING.
XO, Mandy (Brady’s mama)