Braxton's Legacy: Advocating for the future

03/26/2024

Braxton Thomas…. Where do I begin I have a hole in my heart without you but I know you’re no longer in pain. I miss you more than any words can describe. I love you more than all the stars in the sky. I never gave up on you. I knew you were strong I knew you were a fighter before you were even born. I’m so proud of every day that you lived despite the doctors pessimism. You deserved so much better than the treatment you were given. You had so much more life to live and I will always grieve the things we never got to experience with you. I will always regret not fighting harder for you. I’m sorry I failed you. I hope one I can make up for failing you. I can’t wait for the day I hold you in my arms again. So today I say your name. I remember your strength and I share your smile with the world.

Braxton Thomas
08/28/20-01/01/21

03/18/2024

Happy trisomy 18 awareness day to my rule breaker! We got 127 days more than the doctors said we would! 08/28/20-01/01/21 my greatest miracle

01/25/2024

This is the worst program to end. I know parents who personally use this program to stay home and care for the trisomy and CHD babies/kids without suffering financially. Please sign the petition!

547 signatures are needed, let’s get there by the end of the day?

01/13/2024

We are officially registered for the 2024 children’s heart foundation heart walk in St.Louis! We are so excited to get back on the grind raising money and awareness for such an important cause. Congenital heart defects affect 1 in every 110 newborns this equates to 40,000 babies a year or 1 baby born every 15 minutes. Although it’s a leading cause of death in the United States it’s also one of the most under funded in regards to research. I do this walk every year because I was and will always be a HEART MOM. My CHD warrior is now an angel but I will always be a heart mom and this cause will always be close to my heart. So please join us, donate to our goal or share our page. Help us shape the future of CHD.

https://secure.qgiv.com/event/stlouis/account/1656029-Braxtonslegacy

12/29/2023

Tomorrow marks 3 years. 3 years since I heard the words no mom ever wants to hear. I’m sorry there is nothing else we can do for him. Unfortunately we missed our window for repair. Why did they miss that window? because for some reason they cancelled the OR they had booked for his repair on December 11th. We didn’t even know they had scheduled it OR cancelled it until months after his death. I found it by sheer coincidence while reviewing his medical records. They still stand by saying his trisomy had no impact on their decision to wait to repair his heart but in the family meeting on the 16th they specifically said “at this time he is still in the gray area for survival. If he makes it to 6 months we will be inclined to believe he will survive and more open to repairing his heart.” So that is contradictory to what they claim to this day that the decision was not based on his genetic defect. Regardless they did and in turn they missed the window and my baby died. He deserved SOOOOO much more than what he was given. Johns Hopkins is supposed to be at the top for research but yet they chose to prolong a surgery for a genetic anomaly? Make it make sense… because I still can’t. Their values include diversity, discovery,and inclusion but none of those values were displayed in his care in the CICU. I will always believe he could have and WOULD have survived had they provided him the care he needed when HE NEEDED IT and not when THEY felt he earned it.

12/01/2023

Read to the end please !

December 29,2020…… this is the only picture i took that day. This is almost 3 years ago. the day the surgeon stood in Braxtons room and told us that “THEY MISSED THEIR WINDOW FOR REPAIR” and there was nothing else that could be done. you see they claim because braxton had the stroke on ecmo that he wasn’t eligible for ANY surgery for 4-6 weeks and even if he by some miracle made it that long they would REQUIRE a trach and gtube prior to any heart intervention. that would put him back another 8 weeks. so yea they took away ANY chance he had at all. why a trach and gtube before heart repair? why not repair on December 11th when he was originally scheduled? none of this makes any sense. we asked for 2nd,3rd and 4th opinion and we were told there wasn’t enough time so he called his “friends” at other hospitals and they all agreed with him. hmmm. how did they do that without seeing any of his records? and why aren’t any of those “opinions” in his records… today a year ago is the day they presented us with the impossible decision.

here’s a fun fact for you. did you know the statistics that doctors follow say that only 10% of babies with trisomy 18 will survive to ONE YEAR OLD…. BUTTTTT STUDIES SHOW…. with proper medical care and SURGICAL INTERVENTION (heart repair, trach, gtube etc.) 90% will reach the age of SIXTEEN YEARS OLD!!!!

i’m gonna say this for everyone in the back to hear…. for all the doctors out there… update your knowledge ITS CRUCIAL…

Helping a baby with trisomy to survive using necessary surgical and medical interventions IS NOT UNETHICAL. Denying these children the care they need and deserve to survive IS UNETHICAL.

you do not get to tell us that having our baby will be too hard on us and will be a burden on us and our other children.

you do not get to tell us that our son isn’t WORTH repairing until he’s “out of the gray area for survival”

YOU DONT GET TO LIE TO US ANYMORE!!!!

SLOW CODE IS MURDER!

DENIAL OF MEDICAL CARE BASED ON A GENETIC CONDITION IS DISCRIMINATION.

Braxton's Legacy: Advocating for the future



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08/28/2023

🦖 Happy 3rd Birthday Baby boy!

08/27/2023

Gotta catch up on my B lesson’s! 2 days until my sweet boys 3rd birthday! 3 lessons for you today.

Because of Braxton I learned…..

#1 never be afraid to stand up for what you believe in. Braxton was a miracle in all aspects at first I was terrified to say no to the doctors I thought I needed to listen to them after all they spent all the years in medical school. But Braxton taught me that is not the case by a long shot. If you have made yourself an informed parent and know that what the doctor wants or is saying speak up and say no you don’t have to be mean but be forceful let them know you are informed. It could change everything.

#2 Research Research Research! Don’t ever believe what the doctors tell you they learn in outdated medical journals. If I had listened to the doctors many times I would have lost B. He taught me to do my own research and talk to other parents. Parents are the best doctors!

#3 No regrets never regret for one second something that made you smile. I wouldn’t change a second of the time I had with Braxton. Would I take more time ABSOLUTELY! do I wish heaven had visiting hours….. EVERY SINGLE DAY.. but I don’t regret anything.

2 more days baby and you will be THREE!! I can’t wait to celebrate you here I know you will be up there. I miss you

08/21/2023

Just another day of my miracle. This may be a hard picture to see but it was one of the biggest rules Braxton broke. He was the first trisomy 18 baby at John’s Hopkins to be put on ecmo. While that seems like a horrible thing to us it was not. That machine gave us hope. That machine gave us the strength to keep fighting becuse they wouldn’t have offered us ecmo if they didn’t think he could come back from that. He was successfully removed to the doctors shock 8 days later. We hoped and prayed they would offer to fix his heart but they wouldn’t.5 days later they would tell us “sorry we missed our window for repair”

Because of Braxton I learned that statistics are simply statistics they are not a guarantee. Statistics said he would die in utero. Statistics said if he was not born at Hopkins he wouldn’t survive. Statistics said he wouldn’t live longer than a week and statistics said he was incompatible with life. EVERY SINGLE ONE of those statistics were wrong. I delivered him AT HOME ALONE AT 34 Weeks. There’s 2 wrong statistics he lived 127 days that’s the 3rd wrong and finally he laughed and smiled and interacted he knew his mommy and his daddy and his favorite nurses HE WAS COMPATIBLE WITH LIFE!

08/20/2023

As we get closer to Braxton’s 3rd birthday in heaven the days get harder. I can’t believe in 8 days it’s been 3 years since my angel broke his first rule. I learned so much in his short life so many life lessons. So for the next 8 days I will post a little bit of B each day and some of the lessons I learned because of Braxton. 4 months was nowhere near long enough but I wouldn’t change a second for all the money in the world.

August 6,2020… He was Still safe and thriving in my belly. The kicks were my favorite they reminded me he was strong and he wrote his own rules. Lexi loved feeling him kick and he always kicked when she laid on my belly. One of the strongest pains I’ll live forever with is that my girls never got to kiss their little brother or hold him. He never got to feel the strength of their love for him.

Because of Braxton I learned to never let fear run your life you could miss out on some amazing moments. Don’t be afraid to give chances even when your told the odds are slim.

07/30/2023

Late night thoughts about my angel… I’m at peace knowing he is safe and healthy in heaven but god I miss feeling his weight on my chest and his little fingers holding onto my shirt. I miss those curious eyes and his temper over his oxygen tubing and feeding tube EVRY DAY. That boy had s***k. He was one of a kind and I miss him every second of every day. 939 days since I’ve felt those little fingers. I miss you baby boy. Counting down the days until I hold you in my arms again. 939 days closer to you❤️