2018 - The Beginning

On August 16, 2018, the ultrasound tech discovered, by "accident," that one of Jovie's legs was shorter than the other. We were told that they typically only take measurements of one side of the body to calculate growth, but this tech went to move the transducer, landed on her bottom, and noticed that there was a difference. We saw the doctor after the ultrasound and, since she didn't know what could possibly going on with her legs either, she referred us to a specialists.

On August 21, 2018, we went to Maternal Fetal Specialists for an ultrasound to see if they could figure out what was going on. Multiple doctors had never seen this condition before, but one fetal specialist called her friend, Michael Schmitz, at CHOA to ask if he knew what it could possibly be. He, of course, did know, but said it was PFFD and these are very rarely discovered in utero. We were referred to him for a visit to discuss this unknown condition.

On September 10, 2018, as I was working at Mount Pisgah Christian School (MPCS), I saw a payment come through for a Michael Schmitz. Not being a very common name, I looked up to see if the doctor that we were referred to had children attending our school. Here is the email that I sent him.

On Sep 10, 2018, at 2:26 PM, Cheryl Doughty <CDoughty@mountpisgahschool.org> wrote:

Hi Dr. Schmitz, I hope this email finds you well. I am the controller for Mount Pisgah Christian School. I noticed a payment that came through our PayPal account for a Patriot Club membership this morning. The name caught my attention so I had to do a double take. I in no way believe this is a coincidence, but I think you are the Pediatric Orthopedic Surgeon that we currently have a consult scheduled with next Friday, September 21st. At 20 weeks gestation, our baby girl, due in January, was diagnosed with PFFD. Needless to say, we were heartbroken. We have a baby boy, 22 months, here at MPCS now and are very much looking forward to adding a little girl to our family. I just wanted to introduce myself since we have a connection through our MPCS community. We’re looking forward to meeting with you and hope you can put our worries to rest. Kind Regards, Cheryl

And Dr. Schmitz's reply:

From: Michael Schmitz [mailto:mikeschmitz@earthlink.net] Sent: Monday, September 10, 2018 2:48 PM To: Cheryl Doughty <CDoughty@mountpisgahschool.org> Subject: Re: consult

Yes - it is me. PFFD is one of my specialties and you will find that you and your husband will become specialists in PFFD as well. Your baby girl won’t know the difference as to her it is just the way it is - and she will be everything you want her to be. Like your son, she will be at Pisgah, will play, laugh, and learn just like everyone else with a uniqueness that will hardly slow her down. This diagnosis will bother you and her dad much more than it will bother her - just as every parent would have it.

Go to childrensortho.com and click on limb deformity and lengthening then click on the limb deficiency tab. Every one of the patients featured on that page are mine. Read about Declan - total stud. You will see - her greatness will not be determined by this diagnosis

You will always worry - that is the burden all good parents have. But if this is the biggest worry with her you are blessed.

See you on the 21st

During the fall of 2018, we moved into a The Falls of Autry Mill to be close to our current school, MPCS. Coincidentally, one of our new neighbors, who is now a friend, was the VP for the main company that sells medical devices used for PFFD. Only about 17 babies in the U.S. are born annually with PFFD, and within a very short period we were connected with one of the nation’s leading doctor’s regarding the condition, and an expert on the devices used to lengthen qualified patients with PFFD.

Chandler and I went to see Dr. Schmitz, MD, with Children's Physicians Group on September 21, 2018. Reason for visit was an evaluation of a congenital PFFD "musculoskeletal problem" of the left extremity that was detected on a prenatal ultrasound. Dr. Schmitz discussed possible treatment options such as she could be a lengthening candidate or have to have her leg amputated (rotationplasty), but that we really wouldn't know what she needed until she was born.