Our Story

Mia’s journey started in the womb. In May of 2007 we had an ultrasound. We were then told Mia’s heart was not symmetrical with one side being smaller. Her diagnosis was hypoplastic left heart syndrome (HLHS). HLHS is a complex and rare congenital heart defect where the left side of the heart is critically underdeveloped. This causes the right side of the heart to both pump blood to the lungs and to the rest of the body. While advanced medicine has improved the outlook for babies born with HLHS, it still includes multiple surgeries and often a heart transplant is in the future. 

Mia was born on October 3rd, 2007. On October 11, she had her first open heart surgery called the Norwood Procedure. She was on a ton of medication. They did leave her chest open for 2 days before they closed her due to swelling. We then learned to feed her through an NG and give meds through her NG too! They had her on a 27-calorie formula diet with feeding every 3 hours and medicine in between all of the feedings. We left the hospital on October 30th. We were able to get home in time for Halloween.

When she was 4 months old, she had her second open-heart surgery called the bi-directional Glenn. Within a month later Mia had a g-tube placement to help with her feeds. We continued to work by feeding by mouth with speech.

On November 2nd Mia had her third open heart surgery. This was to fix her leaky tricuspid valve.  They tried to tighten the leak so it wasn’t leaking so bad. During this surgery Mia came out of surgery on ECMO. ECMO is a machine that gives life support for her heart and lungs because she was unable to provide an adequate amount of gas exchange or perfusion to sustain life. She was very sick. Five days later she came off of ECMO. On November 25th Mia had a mini open-heart surgery to place a pacemaker. This was to help control her heart rate.

On April 22, 2013, the doctors said she was ready for her final step of the three surgeries. That procedure was called the Fontan. Mia was of course being Mia. Nothing goes smoothly for this girl. Mia came out of the surgery, then days later couldn’t walk, eat, or talk. They are not sure exactly what happened, but we did intense therapies in the hospital. On Mother’s Day weekend I decided we needed to be home because she had ICU psychosis. The day before going home she started to talk again! I was 9 months pregnant. I did not feel like spending Mother’s Day away from family and my other child. We got discharged and got home and within 24 hours, she had a little sister that completed our family. Mia did not like the fact that she had to come to a hospital again to see her sister. She was still nervous she was going to have to get admitted. A day later from coming home with her sister she met me in the driveway taking steps to meet me with the biggest smile and giggle! It was amazing. We continued therapies 3 days a week/ 3 hours a day until she started kindergarten in August.

Mia had mult Cardiac Caths, pacemaker battery change, tonsil and adenoids, and then got a pacemaker defibrillator. Of course Mia being Mia had a tonsil bleed, in the mix with me driving up north getting a ticket from the camera, to my car looking like a crime scene. The ENT doctor then decided he should have listened to me. I told him in the beginning that he should put a safety stitch in and he said nah we don’t do that anymore. Now he says if a heart mom says do something you do it because they know their child best. LOL (I know the surgeon I work with now says “What would Jaime do” in this situation! LOL I’m always making suggestions!)

Mia is a typical teenager. Most people who she meets don’t realize that she has a heart condition and has had multiple surgeries. She enjoys playing with her dog and dancing at the dance studio where she does hip hop dances. She enjoys working at The UPS Store taking your amazon returns. She is the most caring and loving person.

We went on a fabulous vacation to Florida this spring break. We really had a great time!! We stayed at the beach, went to Disney, and went to a PGA tournament. The only thing missing was my son wasn’t able to join because he was in college. We got home on Saturday. Then on Monday she had Cardiac Cath. We were then told that her tricuspid valve was now severely leaking. We talked about maybe replacing the valve or doing a transplant. Lots of kids that get their valve replaced end up having to get a transplant. We discussed not putting her through two more open heart surgeries. This is how and why we have decided she is now on the transplant list. She is listed as a 1b. 1b means we are waiting from home now as she has a central line with cardiac medication running continuously. We will stay home as long as she tolerates it. We have multiple doctors’ appointments weekly. We are enjoying the warm weather and all being together. She did get to go to her 8th grade promotion and walk across stage to get her certificate. We are making as many memories as possible! We will wait for the phone call for her perfect heart.

We have teamed up with the Children’s Organ Transplant Association (COTA) which helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only organization solely dedicated to raising life-saving dollars for transplant-needs. 100% of each contribution made to COTA in an honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.

We thank our family and friends for the continuous support, We would not be where we are without you all. Thank you! Much love The Martins.