Indy’s Fibromuscular Dysplasia & Amputee Journey

Indy Rae’s Medical Journey:

Our second baby girl, Lindyn “Indy” Rae Wheat, was born completely healthy with a few birthmarks on her leg which was diagnosed as Cutis Marmorata Telangiectatica Congenita at 4 months of age. This was monitored regularly by her pediatrician and dermatologist but it was overall a benign genetic disorder and told there was nothing we should really worry about.

Flash-forward to December 1, 2024, when our lives were turned upside down. Indy, at the time 14 months of age, was restless the whole night before and my momma heart just knew something was wrong. I was getting ready to take her to urgent care because I was speculating maybe a viral infection until we realized she wouldn’t put any pressure on her right foot/leg. It was cooler to touch and we immediately got her in the car seat and hightailed it to Children’s Medical Center in Dallas.

We were quickly placed in a room in the ER where we discovered she had a full occlusion (blood clot) of her femoral/iliac artery. We were immediately admitted and met with a surgeon who explained that Indy has a very rare vascular anomaly effecting her arterial system. We didn’t know the underlying cause/disease but we were shown images that clearly showed pearl like strands in her arteries particularly effecting the right leg (same leg as the CMTC from birth). We also found out she has two inoperable aneurysms on her IMA and SMA branches from the aorta.

Because we did not know the cause of the blood clot, there were several possible diseases that could have been catastrophic to immediately go in and administer TPA (clot busting drug). So we were stuck waiting for several specialists to put their heads together as we were upgraded to the PICU. During a sedated MRI to get better imaging, Indy had a hypertensive event that caused more vascular damage to her right leg. The next day we met with all different specialists including geneticists and rheumatologists, vascular surgeons, etc. to try and figure out the idiopathy of “why?”. Still with no clear answers, the geneticist could confidentially rule out some of the diseases that were of worry and we were able to proceed with a catheter administered TPA (clot busting drug). Indy was in a sedated state for 5 days as they administered the TPA into the clot. Although they were able to break up the blood clot, the ischemic damage to the lower part of her leg was too extensive that ultimately we were faced with the reality we had to amputate at the knee. Due to the rare disease and quick clotting, we had to perform an emergency amputation before the leg fully declared itself.

The amputation was successful but we knew this wouldn’t be her last surgeries as there was still dark unhealthy tissue above the knee that needed time to declare itself for final revisions to the amputation. While we waited for this to happen, the tissue from the amputated lower leg was sent to pathology and we were finally given an official diagnosis “Fibromuscular Dysplasia” or FMD. We also had a genetic variant called MYH11 that may be the contributing factor. These are all still being figured out, as this is a very rare disease especially in the pediatric population.

We now have a FMD diagnosis which requires lifetime blood pressure meds, Lovenox blood thinner shots daily, beta blockers to control aneurysms. In addition to quarterly imaging to monitor disease progression.

Beyond the disease, we also have the amputation portion. The leg has fully declared itself and by His Grace, we were spared having to shorten the limb which is huge because of her age and losing her growth plate. The deep tissue is healthy and we are currently letting it heal in-patient while we wait for the optimal time to perform a skin graft. Once this is complete, we will hopefully be on our road to orthopedic outpatient therapy, future prosthetic, etc. But this girl is strong and resilient!

If you have read this far, thank you for taking the time to listen to Indy’s story. We are beyond grateful and humbled by the love, support and prayers. God is good, even in the dark days, He sends His warriors to remind us He is here and working even in the storm.

Due to the level of medical needs Indy requires, we are unfortunately on unpaid leave while medical bills/premiums must be paid to continue her care, alongside just our normal day-to-day bills. Because of all the uncertainty, several surgeries over the past and upcoming weeks and emergent care needed for Indy, we have not left her side in the hospital since December 1st, which has caused us both to be on unpaid leave for the foreseeable future. And to our surprise, care for your disabled minor child is not a qualifying event for Short Term Disability. Once we are finally discharged from the hospital (unknown now), her outpatient care will include 9 different specialities, some of which require multiple appointments a week which will delay mom’s ability to return to work for some time. We know so many have asked to help and we just wanted a way to streamline things by creating this account since the situation seems very long and uncertain of when income will begin to come back in. 

BUT… the most important thing we can use is PRAYERS. We feel them and know He is hearing them. We see little victories every day that keep us going and reminds us how powerful prayers truly are. God is merciful and we know He is going to use her story to do BIG things in her life by using this as her testimony.