In honor of Congenital Heart Defect Awareness Month in February, I am accepting Heart Warrior/Hero stories. Please email me at firstname.lastname@example.org with your story. I will feature a different Heart Warrior each day of February. If I receive more than 28 entries, I may feature two stories a day, or I will continue posting daily until all have been posted. Tell me about a Heart Warrior in your life! (Limited to Congenital Heart Defects for CHD Awareness). You may include up to 3 photos. There is no limit on length accepted, because everyone’s story is different, but please try to limit to under 3000 words, if possible.
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Below is my Heart Warrior story:
Hello. My heart warrior, T.J. (now 4 years old) is my miracle.
I suffer from Polycystic Ovarian Syndrome, which can make it very difficult to conceive. My husband and I tried for over a year using Metformin in the hopes it would increase ovulation and improve our chances. When it wasn’t working, the doctor ordered an HSG test (Hysterosalpingogram) to make sure that my tubes were not blocked. The test was normal, so I took Provera to initiate a cycle, and then Clomid to increase chance of ovulation. A few weeks later, I found out I was pregnant. After the anatomy scan, I remember being concerned because they wanted me to come in again for another scan. But after the second scan, the doctor said everything looked fine, so I released it from my mind.
T.J.’s birth was a bit rough. He wasn’t ready to come out, but at 38 weeks, the doctor ‘accidentally’ stripped my water, and my water broke that night. The labor was long, and in the end required 3.5 hours of labor, a vacuum, and cuts to make it easier for him to come out. We were dangerously close to an emergency C-section, but he came out crying and a little jaundice. Other than the minor jaundice, the doctors said he was perfect. Over the next week, I had to bring him in 3 times to check his bilirubin levels, but they eventually improved. Everything was well.
At 6 months old, his primary care doctor mentioned to me that he had a murmur, but she said that it is usually nothing to worry about and didn’t say anything more. I was a little concerned, but she assured me that it was not uncommon and probably fine. T.J. was constantly getting sick. Ear infections (got tubes in at 1yr), colds, fevers, etc., so he was at the doctor’s office a lot before the age of 1.
Around year old, T.J.’s growing started to slow down. By 15 months, he was in the single digits on the growth chart for both height and weight, but the doctor said he was proportionate and likely just going to be small. I had a hard time with this thought, because my husband is 6’1 and I am 5’7. My husband was born over 9 lbs. and I was over 8. We both grew up chunky. At each appointment I would ask about his lack of weight gain or growth. Sometimes he even lost weight since the previous appointment. “Give him Pediasure” is about all I got.
At about 16 months, he started going to a different doctor, because I had baby #2 and I wanted them to have the same doctor (the military base wasn’t allowing babies to be seen off base when baby 2 was born). At his 18 month check-up, his new doctor was very thorough and we went over all of the sicknesses and issues I remembered the first doctor talking about. I mentioned the murmur, and the doctor listened very closely to T.J.’s heart. By this time, T.J. knew oh so well the routine of visiting the doctor and was good at sitting still and waiting. She said she did hear a murmur, but she also thought it was probably nothing. She said, “most murmurs in small children go away by 4 or 5.” Okay. She did take an interest in his height/weight charts. He was getting noticeably lower on the charts as he grew. She gave us a lot of advice on what to feed him, and had us return every month or so to check his growth. Each time, the same routine, including checking for the murmur, but doing nothing.
When Trent 2 years old, I was diagnosed with a genetic condition, Ehlers-Danlos, which can have some cardiac issues and calls for an echocardiogram upon diagnosis. Because it was genetic, and I knew something was going on with T.J., I asked to have him evaluated for the disorder as well. It was still a little early; they don’t generally evaluate kids under 4 or 5 because of the natural flexibility (one of the signs) of children. The geneticist diagnosed him very easily. She said that even with his ‘baby flexibiliy’, he was far more flexible than normal, and he had many of the other systemic signs. With the diagnosis, his doctor listened closely and for a long time to his heart, and admitted the murmur was very quiet, but still there. That coupled with the EDS diagnosis was concerning, and he was scheduled for a baseline echocardiogram right away. For EDS’rs, echocardiograms are done regularly (often annually) to check for any aortic dilation, and the first is to provide a starting point to look for changes at later checks.
I still remember just about everything about that echocardiogram. T.J. was 2.5 years old. We lived in a small town. The only pediatric cardiologist in town was actually from 4 hours away, and only came to the office a couple of days a week. He was very young. Very new. The Echocardiogram tech was a young woman, she seemed very smart and confident in her work. There was a young new doctor in the office for training as well. I’m not sure where he was in his schooling, perhaps a resident interested in cardiology, but he also seemed smart and pleasant. I think that he may have been sitting in on the echo because of T.J.’s diagnosis of Ehlers-Danlos. It is a fairly rare (1 in 5,000 or 1 in 10,000, depending on the source), our doctors’ appointments tend to have a lot of trainees/new doctors/interns/etc. in them. Regardless, both of them made T.J. and I more comfortable in the office. T.J. did amazingly during the echo. He watched Mickey Mouse and ate animal crackers that the tech gave him. He didn’t whine once. During the echo, I was comfortable. It was just to get a baseline after all. It wasn’t intended to find a diagnosis. It was intended to prepare for future check-ups.
About half-way through the echo, I noticed it seemed to be taking a bit longer than I expected, and the tech seemed to be looking at the same pictures over and over. The trainee doctor started getting very interested. More than I thought normal based on the one I got a few months prior. Then he said to the female tech, “Is that…?” She responded, “Yes, ASD.” Of course, at that time, I had no idea what that meant. I started to get really nervous though. I had already had my echo, and it was normal and nothing like this. After what seemed like an hour (though it may not have been quite that long, I really don’t remember), the tech said, “okay, we are done. I’m just going to go check with the doctor and make sure we have all the pictures we need.” I’ve heard them say that before. Okay.
It wasn’t until the doctor came in with “the face” that my heart began to race. He sat down and started, “T.J. has what is called an Atrial Septal Defect. It is a congenital defect that likely occurred during development in the womb. Essentially, there is a 17mm hole in the wall between the left and right atrial chambers.” He drew a rough picture that indicated a hole and explained the concern with the oxygenated blood flow. The oxygenated blood was mixing with the non-oxygenated blood, creating a lot of pressure in the right side of the heart. The right side of the heart was nearly twice the normal size, and the whole was very large, large enough that it would not close up on its own like many ASDs found in young children. He stated, “since he isn’t symptomatic, I recommend waiting until he is 4 or 5, so that he can have the laparoscopic surgery to patch the hole. Right now, his veins were likely too small, but if we wait a couple of years, he can have the procedure. It has a 95% success rate and a shorter recovery time.” My immediate response was, “He’s not symptomatic? He is considered failure to thrive, below 0% for height and weight on the growth charts. He is sick constantly, enough that they thought he had asthma. You think we should wait 2-3 years?”
His response angers me to this day. “Well, it is a very large hole…[he paused for about 4 seconds here]…, but he should be fine. Most kids wait until 4-5, and laparoscopic is better than open heart surgery, which would be quite risky right now. We will schedule you to come back in a year for another echo…[pause] well, the hole is large… [pause], why don’t we schedule it in 6 months?”
I hated not knowing anything about his ASD diagnosis at the time. I wish I did, because I would have argued and argued with him until he did something more. Instead, I called my case manager. Luckily, I was working at the military base clinic at the time, and I spoke with the Chief of Medical Staff every day. I spoke with her about it, and she was outraged. She wasn’t a cardiologist, but she was a doctor, and she knew he didn’t do everything he could. She called the case manager, and within 24 hours, she had a call into the #1 Pediatric Cardiologists of the state. He specialized in Congenital Heart Defects and had over 25 years of experience with CHDs. (TIP: LEARN MORE ABOUT ANY AND ALL DX’S YOU GET! MOST DOCTORS DON’T TELL YOU EVERYTHING YOU NEED TO KNOW. BE YOUR OWN ADVOCATE.)
T.J. was accepted as a patient, and we went to see him within a couple weeks. He told me that he looked over T.J.’s chart, and reviewed the echo. The satellite office in my hometown was from this doctor’s hospital system, and he had access to all of the notes and tests. The first thing he said was “I’m sorry. I’m sorry that you were not treated as you should have been. We are addressing the situation, and I am glad you came to see me.” I breathed. Have you ever so relieved, that you realized you hadn’t been breathing fully? I could feel my chest loosen, and I took full breaths. Over the next 30 minutes, he showed me the scans, he explained how his heart was working so hard that it was wearing T.J. out. He explained that just to beat his heart, he was burning calories as if he was running marathons. His body stopped growing because it was busy keeping his heart beating. He told me, that if I had taken that doctor’s advice and waited even just a year, T.J.’s heart may have been beyond repair. Continued pressure in the right side could lead to the natural pressure in the heart reversing to the opposite side. This was not something that could be corrected, and it would put him in danger of serious heart problems for the rest of his life. This doctor is one of the people that saved my son’s life.
His new doctor also let us know that at his age open heart surgery would be the safest option. Because open heart surgery has been done for so long, it has a 99% success rate, compared to the 95% success rate of the laparoscopic surgery. Plus, it has been proven safe in the long term, while laparoscopic hadn’t been around as long, and may have more risks in later years. It was too new to know the risks past 10 years. So, T.J. was scheduled for open heart surgery. We took two weeks prior to the surgery off of work in order to make sure he was home from day care and didn’t get sick. I was still new in my job, and hadn’t had much leave available, but some amazing federal workers donated their leave to me, and I was able to take a total of 8 weeks off. A few days before his scheduled surgery, we got a call that it would have to be postponed due to some emergency procedures that needed done. So, we had to take another two weeks off to continue to keep him as healthy as possible before his surgery.
The day before the surgery we took the four-hour drive to where his surgery would take place. We stayed in a hotel, because we had to be at the hospital at 6:30 am for prep. He was supposed to be the first surgery of the day. Unfortunately, some children came in needing emergency services, so we stayed in the prep area until it would be his turn. Every couple of hours, they would bring T.J. some juice to hold him over, only if they knew it would be at least two hours. Seeing them come in with juice increased stress more and more. T.J. did so well. By the time of his surgery date, he was always tired. He played on his tablet, and he got to play in a plastic car toy in the hallway a few times. He was wonderful.
It was evening when the Chief of Surgery in Pediatric Cardiology came in and told us that if we wanted, we could come back the next day, but he had gathered a group of volunteers that were happy to stay late today to make sure that T.J. had a successful surgery. He said he would be the one to do the surgery, and everyone that stayed was happy to do so, eager and alert, and T.J. would be taken care of. Rather than making T.J. go another day without food, sitting in a hospital bed, and stressing all over again, nervous about the surgery, we decided to stay. He went in to surgery around 9:30 pm. His surgery was quick and uneventful, which is a good thing. He went into the ICU after surgery, for an obligatory stay before being moved to his room. He was in the ICU for about 12 hours; a very short period of time, because he was recovering so well. When he woke up, he asked for chocolate milk, which he kept down. He was tired and groggy, but his color was returning quickly. He was already so pale before the surgery, but we didn’t realize how pale until he started getting his color back.
He spent 3 days in recovery. He did so well. Almost no complaining or whining. The nurses joked (though in an honest way), “Children are so much better recovery patients than adults; they are much more pleasant and complain much less.” When they removed his central line, he was like a whole new kid. He was alert and happy and hungry. It was an immediate change. Soon it was time to go home, and he did so great. My heart was full.
Not a week after, he was running all over the house again, which he hadn’t done much in months. It was amazing. His surgery was just before Christmas. We felt bad because we didn’t get much for Christmas, with everything going on. On Christmas Eve, my boss was at my front door. Mind you, I had only been working there for about 4 months. But my boss tells me he has a delivery for me and handed me a card. I opened it as we walked to his SUV. As I am reading, he opens the trunk. It was a Christmas card, signed by a lot of people from my squadron. I look up, and the trunk of his SUV was FULL of presents for BOTH of my kids. I was nearly in tears. I did cry hard later. A number of times. We brought in all of the presents and our living room was overwhelmed with gifts. I still tear up when I think about the most beautiful gifts we received that year: HEALTH, LOVE, AND KINDNESS.
T.J. has had two echocardiograms since his surgery and both have been normal and beautiful. He is growing, learning and active. He is my hero. He still talks about his ‘zipper’ and shows anyone who asks to see it. It will be his awesome scar story.
My heart hero: T.J.W ❤ ❤ ❤
Thank you to all of those that have supported us through a very difficult time. So many people stepped up to give their support, through donating their earned vacation time, getting presents for the kids, being a shoulder, being a friend, babysitting, just asking us how we were, and so much more. We love you.
I would love to hear your stories. Please email them to me ASAP at email@example.com to be featured on this blog in the month of February. From one Heart Mom to another Heart Parent, I know you are brave and strong and courageous. Help spread awareness to increase funding for research and improve treatment options for CHD sufferers.