Help a single mom with her medical miracle baby!

Hello world! My name is Karlie and I am 25 years old.

I gave birth to my first child on December 3rd 2021! 

Jerome Charles Mitchell, he goes by Romie!

(Scroll to the bottom for original post!)

Officially 7 months old!

July 2022 update from Romies perspective:

Things have been crazy lately! A couple of things have happened and are happening in my life! 

First off, I met my new orthopedic surgeon! 

After some difficult X-rays of my legs, we have a new diagnosis. We previously thought I was missing my fibulas (my mom called me fibu-less, like fabulous but funnier!) As it turns out, and usually does with me, what we thought was true, is not! I have both fibulas but neither tibias! Of all my rare diagnosis’, this one is extremely rare!

 Bilateral Tibial Hemimelia!

With that being said, my new orthopedic surgeon agrees with the last one, bilateral leg amputation might benefit me in the future. We will have to see how I grow and develop and if all of the painful braces and procedures would even be worth it. 

My cath lab procedure we did on June 9th showed the pressures in my heart telling us my heart is not ready for our next step in our procedure plan. Because of my MPA band causing stenosis in my right pulmonary artery, the Glenn procedure is postponed until the end of the year, hopefully. My team says we need to do a corrective surgery on the band we placed on my main pulmonary artery in January and get my heart healthy before we proceed with the Glenn.

I am scheduled for August 22nd at 7:30 am for another open heart surgery. This one will be a little harder than the last. I will be put on bypass so my organs will continue working while they place an internal band in my main pulmonary artery and repair the stenosis of my right pulmonary artery. 

Adding another open heart surgery to my list of procedures was never planned or expected.

I am on a cancellation list so if there’s an opening for my surgery to happen sooner, we will let everyone know! Also, my cardiology team is watching my heart closely in case they have to interfere before then, they will.

After I recover from this open heart surgery I will be having a corrective surgery on my colostomy! My stoma has been retracting for months and is currently flush with my belly! If you know colostomy bags and stomas, you know how hard this can be to get a bag to stay put! 

We are watching it closely as we have been. 

We just want my heart to be in a better place before going into another surgery that hopefully can wait!! My pediatric surgery team is ready to act if needed! 

 I also have another study coming up before my colostomy corrective surgery. This study will see if my prostate and mucus fistula are connected or not. Hopefully we will be able to remove my mucus fistula completely! 

 After recovering from the colostomy surgery we will do another cath lab procedure to see if my heart is ready for the Glenn and then hopefully we can start planning for that! The Glenn procedure will bring my heart to a much more stable place. It’ll make me insanely healthier!!! 

 In the in between of surgeries, I will have an MRI of my brain to make sure everything is good with my optic nerves being small and whatnot! I will also have an MRI to see if my spinal cord is tethered! And finally, I will have an MRI on my legs to determine if there is any pieces of tibia not seen on my X-rays. 

I will be seeing a hand surgeon soon to discuss what options we have to make my hand more useful to me in the future! I also have an appointment with a physiatrist at the end of this month to help with motor skills and therapy from a neurological stand point!

I have physical therapy, occupational therapy, and speech therapy every week! And a couple of times a month, my team with soonerstart also does therapy with me! 

Every night my mom helps me stretch and massages my muscles! 

It’s taught me that I can use my limbs more than I even thought! I’m learning all kinds of new things! 

I know how to laugh now and nothing stops me from laughing most of my days away!! 

All of what is going on can’t crush my spirits!!! 

My mommy is trying to get me specialized help with private duty nursing but the state has given her some push back. She is always ready to fight for what I deserve though! Hopefully soon we get the help we need! 

Some of the many amazing specialists I see include: cardiology, pediatric surgery, neurology, genetics, nephrology, urology, audiology, ophthalmology, GI, ENT, speech therapy, occupational therapy, and physical therapy! I have a lot of brilliant minds on my care team!! Including palliative care! And of course I have my pediatrician and dentist!

We need financial help. Although we receive a small amount of social security income each month, we are barely making it! From rent to car insurance and phone bill to gas, we have very little to survive off of each month, if anything at all. 

We’ve put aside fixing the new car and got help fixing the AC and the control arms in the old car. It’s not the most reliable vehicle but it gets us to and from all of our appointments currently. The repairs on the new car are just way too costly for us. The old car still has a lot of repairs needed like struts, an alignment, tires, brakes kit, interior door handle, and although it’s not a big deal, the radio doesn’t work.

I would love to be able to get Romie some toys that work with his abnormalities. I just don’t have the money. 

I’m trying to find a seat that he can learn how to sit in because he doesn’t fit a bumbo due to his leg deformities. 

I need to start building a rainy day fund but I see no end in sight on our financial catch up game…

If there’s anything you can do to help a single mom, please find it in your heart to help us. We are so thankful of any and all support through such a difficult time!

Thank you ❤️‍

^Healthy heart vs Romie’s heart^

This image of Romie’s heart was hand drawn by one of our cardiologists, the brilliant Dr. Salkini!

It show stenosis of the RPA due to the band moving on his (short) MPA. The muscle at the base of the MPA has also tightened and is being managed currently with the medication Digoxin.

April 3rd, 2022 update:

We’ve come such a long way!!

And not alone at all! We have been blessed with a lot of love and support!!

We move into our new apartment tomorrow!!! It’s going to be crazy being in our own place for the first time! We are thankful for the opportunity Catholic Charities is giving us, a place to call home for the next year! Starting over is always tough but I’m thankful to have the help!!

We also got a new car that is pending a list of repairs! Once I have all of the funds to fix it, we will have reliable transportation! With heat and air!!! If you know how the weather in Oklahoma is, you’d know you may need both in the same day, possibly 20 minutes of each other!

My son is doing great! He’s happy and growing! He is 4 months old (today actually!) and has been out of the hospital for a month! Minus a couple of days where we were at the hospital with parainfluenza. We are looking at possible procedures coming up and open heart surgery within the next 2-5 months! 

I appreciate all the help that we can get! We’ve got a long road ahead of us but I know we will get through it head strong, heart full, and spirits lifted! Especially have all of the love and support we have to back us up! Just know we love every person believing in us!

God is good!

Please help us out if you’re able to or share if you aren’t?

 Love from Romie 

Original post:

I am asking for help in any way possible! After the pandemic and a high risk pregnancy, my income has dramatically decreased to nothing. I am currently staying in a hotel by the hospital but when we are discharged, I will be taking him to my sisters until I can get us a home to call our own. I am very blessed to have the option to stay with her beautifully big family but adding me and my medically challenged miracle boy to the mix, is a lot!

I am hoping to get us a home ASAP as we will be discharged very soon!

I could use any and all help available.

A little back story:

I found out of most of his abnormalities at 20 gestational weeks. I knew his right hand and both feet were clubbed, he was missing bones in his legs (fibulas), he was missing his left arm, his right arm was also missing bones, his spine has abnormalities, he has 3 congenital heart defects, he has only 1 kidney, single artery umbilical cord, and they said echogenic bowel. I found out after my planned c section at 37 weeks (12/3/21) that he has imperforate anus! ARMS without fistula!

The anorectal malformations (ARMs) without fistula occurs in approximately 5% of all ARMs cases.

We were told he has VACTERLS association as he has vertebral abnormalities, anal atresia, cardiac defects, tracheoesophageal, renal, and limb abnormalities with a single artery umbilical cord!

VACTERLS association occurs in 1 in 10,000 to 40,000 newborns.

People diagnosed with VACTERL association typically have at least three of these characteristic features. Affected individuals may have additional abnormalities that are not among the characteristic features of VACTERL association.

Romie has all characteristics of VACTERLS as well as many other abnormalities! He is less than 1 in a million, literally!

Now we are looking at HAAO and anything else that might come up in the genetics that were sent out of state recently!

With all of what we have going on, the financial burden will be very heavy.

My immediate need is reliable transportation so we can get back and forth to the hospital and the many appointments he will have regularly. I also need to find housing near the hospital and I am working with Neighborhood Housing to help me get into a place when we find one.

My long term needs, and the reason for me creating this gofundme, is a much longer list.

My son has a colostomy so supplies and probably custom clothing will be needed. We will also need customized clothing for his deformed limbs. Splints, braces, and casts will be in our future. We might need a wheelchair when the time comes. We need a lot of medical supplies and developmental toys.

There is always some unexpected costs when having a child who needs constant medical attention.

There is so much unknown when it comes to his care. He is so rare with so many challenges.

I need help.

You never anticipate having your first child and not being able to care for them financially. I wish the situation was different and that I was in a better spot. I am doing everything I can to be as prepared as possible for taking him home but I know I cannot do it alone.

Please find it within your heart to donate anything you can!

This world has never experienced such a rare, beautiful, capable, strong, handsome little boy like my sweet Romie!

He is most superbly unique. He has blown minds of hundreds in the mere two months he has been in this world!

Together him and I will learn so much and teach each other an incredible amount of things! Also, how blessed are we to be able to teach so many others as well? I adore every bit of everything he is! He is the most precious little dude.

Romie has had his colostomy surgery, PDA litigation, and MPA banding. His first open heart surgery was successful and we have 2 more before he is even 4 years old. The next open heart surgery will be sometime this year, probably within the next 6 months.

He might need a heart transplant in his teenage years.

I don’t know when or if I’ll be able to work a normal job again. There is nobody else who can take care of my son and with all he has going on, I don’t know that I could ever trust leaving his side.

I have spent every single day at the hospital with him since he was born! There is nowhere I would rather be!

Please help us if you can.