Meet Emma

Today you meet Miss Emma.  I knew Travis, Emma’s dad, from high school, but he was closer to one of my older brother’s age so I didn’t get to know him well at the time.  It wasn’t until I went to work for an SRC company that I got to know Travis better.  After Reiss’s diagnosis at 20 weeks, a coworker mentioned that Travis Stewart also had a heart baby.  Now we talk about our daughters’ diagnoses at company events and he has even put me in touch with some other heart mamas.  Travis’s wife Mary Beth wrote the below blog about her pregnancy, diagnosis and the many trials and tribulations their heart warrior has and continues to endure.  – Sara

Emma Elizabeth Stewart

Emma Elizabeth Stewart was born June 4, 2005 in Springfield, MO. My pregnancy with Emma became rocky towards the end. I ended up going into premature labor at the end of April, 2005 and was placed on bed rest for the remainder of my pregnancy. I was diagnosed with Polyhydramnios (more simply put….excessive amniotic fluid). We were told I had three times the amount of amniotic fluid that I should have had; although it felt like I was carrying the ocean around with me!! This condition and premature labor created the bed rest and weekly ultrasounds and stress tests to monitor Emma’s condition in the womb. Through every ultrasound we were told that Emma looked great and there were no problems with her. On June 3, six weeks before my actual due date, my water broke.  They weren’t kidding about excessive fluid either; it seemed like the Hoover Dam had broken! It was one of the most exciting moments in my life though, to call my husband and tell him my water had broke and it was time! We rushed to the hospital and had fairly good labor, despite the fact that after pushing for several hours, the decision was made to have a c-section. Emma was born at 3:30 a.m. weighing in at 6 lbs. 1 oz. and came out screaming and perfect! Her Apgar scores were good, and we were told all was well!

However, our lives were forever changed suddenly at about 8:30 a.m. when Dr. James Shapiro, pediatric cardiologist, came into our hospital room. He was a complete stranger at that point and little did we know when he walked in, he would become one of the most important persons in our lives. He very calmly told us that Emma had a significant heart condition and that St. Louis Children’s Hospital was on their way to fly our daughter to the hospital in St. Louis. It is a moment that felt almost surreal.  Did he just say what we think he said?? At that moment of shock and disbelief, a million questions start going through our heads! How could this be?? We had WEEKLY ultrasounds and no one every saw the gaping hole in her heart or the fact that she didn’t have a pulmonary valve??  But the one that stood out was this; is our daughter going to live? That’s all that mattered at that moment.  After the doctor answered yes to that one question, the rest of what he said was pretty much a blur! My next reaction was to get out of the hospital bed and I demanded to see my daughter; who at this point had been admitted to the NICU. I didn’t even feel the pain of the c-section right then; I needed to get out of that bed and get to my daughter! The hospital staff was very accommodating and allowed us to see and hold Emma in the NICU as we waited for the St. Louis Children’s Hospital flight team to arrive. We were even allowed to go outside and watch the helicopter take off with Emma inside en route to St. Louis. My husband, Travis drove to St. Louis to be with Emma that day until I could get discharged from the hospital in Springfield and join them a few days later. Those first few days were extremely hard. I couldn’t be with my child and my husband, who had not only entered into parenthood for the first time, was entering it under extreme circumstances!

The journey had begun. We were inundated with medical information; trying to learn everything we could about Emma’s condition (the internet is VERY scary too by the way!! The doctor’s told us to stay off the internet looking for information about her condition……..yeah, like that was going to
2 happen!).  Emma had her first heart catherization on June 7th, 2005 in St. Louis.  Her diagnosis was ultimately given to us: Tetralogy of Fallot with Pulmonary Atresia. In addition, she has a genetic disorder called DiGeorge syndrome (she is missing a portion of her 22nd chromosome). WOW, that’s a lot to take in docs!! We were told she would need her first heart surgery at approximately 6 months old. At that time, we were allowed to take Emma home with a pulse ox machine to monitor her oxygen saturation levels.

Towards the end of June, 2005, Emma’s oxygen saturation levels had plummeted and at one point got to the 50’s and she was immediately admitted to the hospital and yet again flown from Springfield, MO to St. Louis, MO (at one month old she was already becoming a frequent flyer!). 1Emma had her second heart catherization on June 30th and ultimately had to have her first open heart surgery to place a pulmonary conduit on July 1st, 2005. I can’t even express in this post the plethora of emotions that were going on at that point. Much of it seems like a blur. The hardest moment was carrying Emma to the doors leading to the surgery rooms and having to hand her over to the doctors, not knowing if that would be the last time we’d see her alive. What if something went wrong??!?! She weighs 6 lbs and you’re going to operate on her heart?!? The staff at St. Louis Children’s Hospital though has always been extremely empathetic and understanding. We were very blessed to have a hospital capable of handling Emma’s medical condition fairly close to home. Her first surgery was a success!!!

Unfortunately Emma would continue to have many medical issues. She began not eating and wouldn’t gain weight, therefore, at three months old a feeding tube (mickey button) was placed in her stomach and she was fed through the tube. She FINALLY began eating by mouth and not using the feeding tube as her primary source of nutrition when she was five years old (yep, a VERY long time of trying to get her to eat!). She still has the mickey button today and we have to continue to supplement her nutrition at times to keep her weight up.

Emma continues to have pulmonary hypertension, an enlarged right ventricle and lungs that don’t function normally. She has had RSV, Human Metapneumovirus (HMPV) and so many pneumonia’s we lost count years ago!  Every cold she gets has the potential of turning into pneumonia.  In late 2011 we received a vibrating Vest that we use to treat her when she’s congested.  Treating her with the vest has cut down on her pneumonias significantly.3

Emma has undergone a total of 10 heart catherizations and three open heart surgeries. Each of those procedures having their own difficulties and ups and downs in the hospital… I really could write a book!!! Each time we thought a procedure/surgery would be “routine’, it ended up being anything but. From getting pneumonia to not eating to blood clots to needing blood transfusions to a heart catherization turning into her being rushed to the operating room for open heart surgery- it seemed like it was one thing after another.

However, Emma is a fighter and has ultimately come out with flying colors each time. Her last procedure was on 6-28-12 when she was the smallest child to receive a Melody Valve. We had to wait six months for the EPA to approve it’s use in someone Emma’s size, as well as three appeals to the insurance company to pay for the procedure to prevent her from having to have a fourth open heart surgery (yes, “dealing with insurance” is a book in and of itself!).  Due to Emma’s physical size and the size of the catheter required to deliver the Melody Valve, the doctor’s had to go in through Emma’s jugular vein. The Melody Valve placement was a success; however, a few hours after surgery her jugular vein began bleeding. The staff at St. Louis Children’s Hospital held pressure on her jugular vein for 10 hours! TRULY amazing staff and an amazing hospital! She ultimately recovered and the procedure was considered a success.

4At this point in time Emma is 8 years old. She still requires oxygen at times, but is holding steady with regards to her heart and lungs. We know she isn’t out of the woods and have been told several times that ultimately she will need a heart and lung transplant. However, we know advancements are being made everyday to improve conditions such as Emma’s. She’s already been able to receive a Melody Valve that wasn’t previously available to patients like her!! So we are hopeful that future medical advancements will continue to be made to help Emma’s condition and ultimately she wouldn’t require a transplant.

I know this has been extremely long. Believe it or not, I have condensed the information! Hopefully this information will inspire other families dealing with similar circumstances even if it’s just knowing that other families are going through the same situation.

 

2 thoughts on “Meet Emma

  1. Love seeing her story. I know her mama well – and my daughter had the privilege of doing some babysitting Emma – and she is one special girl…….. so is her mama!

  2. Do you have contact information for Mary Beth that could be pass along to me? My 3 month old daughter Evanna also has Tetralogy of Fallot, Pulmonary Atresia, VSD + MAPCAs and 22q11 (DiGeorge Syndrome). Would love to connect with them 🙂 Thank you,

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