--Jordan’s Journey--
I had a somewhat “normal” pregnancy with Jordan. I had complications in the beginning that caused me to have early ultrasounds. She was the size of a rice crispy when Jeremy and I first heard her heart beat. It was a beautiful sound! After my 1st trimester, the time seemed to fly and I didn’t have any more complications. We had another ultrasound at 20 weeks, which we were told showed Jordan was growing like she should be and nothing was of concern.
We were thrilled to have Jordan join our family on August 9, 2006, by scheduled C-section. She was born at 8 lbs 3 oz and 20 inches long. I fell in love with her instantly and knew everyone who was touched by her would feel the same. She had her Daddy wrapped around her finger within seconds. Her brothers, Riley and Drew, were ready to dote on her every need. Later that day, Jordan’s doctor, Dr. Johnson, informed us she thought she heard a heart murmur. She explained to us that many babies are born with a ventricular murmur and tend to close up on their own within a short bit of time after birth. The next day, Dr Johnson thought it had gotten quieter, so wanted to just monitor it before doing any further testing.
We had spent 3 days in the hospital. Within this time, Jordan had lost almost a whole pound. While it is normal for babies to lose weight after they are born, Jordan wasn’t gaining it back as fast as her doctor would have liked. However, she had told us that babies gain weight at different speeds and would probably gain at least some of it back in the next day or so. Our home nurse visited us 2 days later and determined Jordan still hadn’t gained any but she hadn’t lost any more either so wasn’t worried about it. At our 2 week appointment with her regular doctor, Dr. Hempy, Jordan’s heart murmur couldn’t be heard anymore so we did no further testing but she was still slow to regain her birth weight.
As Jordan got older, we noticed her weight was becoming more of an issue. She had her own growth curve well under the 3rd percentile. She would fall asleep during feedings and would sweat when she slept. She also wouldn’t move much from the spot where she had been put down. These were things we had put off as normal and didn’t feel the need to mention them. She was a happy baby! Throughout the year, we would take her in for weight checks and there was always a gain- a small gain but still a gain in weight. Since she was growing, again there were no tests.
Then it all changed on August 10, 2007. Our view of life changed. We realized just how fragile we really are and just how precious life is.
We had celebrated Jordan’s 1st birthday the day before and now we were at the doctor’s office for her 1 year check. Since Jordan is our 3rd child and having been through this before, I started to feel worried when Dr. Hempy spent more time than usual listening to her heart. After what seemed forever, she told us she thought she heart a murmur. We had reminded her Jordan had been born with one but we hadn’t had any further testing done since it had gone away. Dr. Hempy referred us immediately to the Children’s Hospital of Iowa at the U of I Hospitals and Clincs and to Dr. Scholz. Amazingly, we were scheduled to have an echocardiogram, chest x-ray and EKG the following Monday. We met with the fellows and the technicians that morning. Jordan’s tests took all morning. When the fellow looked at us and said “Dr. Scholz would like you to come back this afternoon to discuss Jordan’s condition”, worry shot through me again but just thought “Oh well-he must be behind seeing his patients and doesn’t want us to wait here with a hungry 1-year-old. Let’s go get lunch.”
When we got back, Dr. Scholz told us the news that changed our lives. We were expecting to have Dr. Scholz tell us “Yep! It’s a murmur. She’ll just have to take antibiotics before having any dental work done but this isn’t anything we are worried about right now.” But it wasn’t JUST a murmur. Jordan had congenital heart defects. She had a cleft mitral valve where the leaflets did not form together and left a lot of room for regurgitation. Unfortunately that wasn’t the end of it. She also had an AV transitional canal which basically means she had a hole in the wall that divides the right and left side of the heart. She was in congestive heart failure and needed to be put on medication right away. The only way these defects can be corrected was with open heart surgery. Huh? I didn’t even know that heart defects were common with children. A friend of mine who I had grown up with had a major CHD which required multiple surgeries but she was the only one I knew! Was this what my daughter was going to have to go through? No way my little girl had CHDs! Other than her weight (even at 1 year, she only weighed 16 lbs 4 oz), we didn’t know anything was wrong! How could we not have known??
I was so numb when Dr. Scholz was discussing the extent of the defects and the procedure with us that he looked at me and said “You are amazingly calm for what was just said.” All I could do was smile and say, “This is not something that I can change or ignore. We need to know what needs to be done and how. I can break down later!” And I did. After the shock wore off, I completely broke down. Again the questions of … How did we not know for so long? Did I do this? Did I do something, eat or drink something I shouldn’t have? Jeremy had been in Iraq in 2003-did his vaccinations do this? Did he get into something he didn’t know about? … I started to think why was this not picked up on the ultrasound at 20 weeks? How had we gone the whole 1st year of Jordan’s life without any issues other than her weight gain? And more importantly-why was her murmur not heard before?
Dr. Scholz told us it wasn’t uncommon for this to be missed. The only reason it was heard now was because of the congestive heart failure. All I could think of when he told me this was why isn’t this screened for after birth?? We had Jordan’s hearing checked why not have an option to have her vital organs too? Seems to me you need your ticker more than your sense of hearing.
By Wednesday that week, Jordan’s surgery was scheduled for the following Wednesday. We were very anxious for the day to come!
We were scheduled to arrive for surgery by 6AM. That was the day we handed our daughter’s life over to Dr. Davis and Dr. Stephens. It was one of the hardest things we have ever done. I know what by-pass is but to be reminded it will stop your child’s heart through me over the edge. I took Jordan into the OR but had to be helped out as I had completely broke down. When Jeremy saw me, there were tears in his eyes too. We held each other up and got upstairs to the PICU family lounge where we were to spend our time during the surgery. I spent most of the time curled up on the couch or updating others about Jordan’s progress.
Jordan was put on bypass around 9:45AM. We got text pages from Tina (one of her nurses) throughout the surgery to tell us how things are going. We got the best page at 12:25 PM telling us Jordan was off bypass and was responding well. She had the repair done to her AV transitional canal. Her mitral valve still leaked but the doctors felt comfortable with it.
Nothing prepares you to see your child wheeled out of open heart surgery. Jordan was on a vent that was helping her breathe, had tubes and wires everywhere including in her neck providing lifesaving medications along with blood. She was hooked up to so many machines that when they went off I jumped! These were the things helping Jordan survive!
Luckily, she had no real complications and was discharged from the hospital 5 days after her surgery. We went home scared but happy to have our baby home again. I was very excited to be with my sons again too! It was hard to be away from them, but felt I had to be with Jordan. They would come see us but they didn’t like being cooped up in a hospital room. Who could blame them?
Since her surgery, Jordan has been diagnosed with subaortic stenosis. Another surgery is possible in her future to replace the aortic valve. This is something that currently is not urgent and is being watched by Dr. Scholz. She still has issues with her low weight but is under no restrictions nor is on any medications. Jordan is doing great and acting like a normal 2-year-old! She just has yearly cardiology appointments along with her yearly physicals.
--My Hope--
Being told your child has a defect of any sort taxes your confidence as a parent. Was there anything I did? What could we have done differently? We learn more medical jargon than we ever thought we would ever need or want to know. We learn what signs to look for if there is any trouble and then worry when there is even the slightest sign something could be wrong.
Having a child with a CHD also brings in new issues of having the simplest of surgeries like having tonsils removed. Most recent EKGs, echos, x-rays, and notes from the last cardiology visit are sent to be reviewed only to have anesthesiologist refuse to do it the day of surgery due to not having the proper cardiology staff on hand “just in case”.
My hope for the future is more awareness is brought to congenital heart defects. Picking up any parenting magazine, you don’t find many articles about CHDs even though it is the number 1 killer of children. I didn’t see information on them amongst the spinal bifida and downs syndrome pamphlets given to me at my 1st appointment. My OB did not mention how often babies are born with CHDs. My OB does schedule ultrasounds at 20 weeks but many do not and depending on your insurance company, it may not be a procedure covered by their plan. CHD research is an issue as it only gets pennies compared to research for pediatric cancer when nearly twice the number of children die of a CHD than all pediatric cancers combined. 40,000 kids are born with a CHD every year! Sadly 4,000 of them will not live to see their 1st birthday.
As Heart Parents, we do not tell children’s stories to get sympathy. We tell their stories to make others realize this is a REAL concern! If you don’t know someone with a CHD, YOU WILL! We bond together to get more answers, more research, more awareness of such a deadly defect. We pick each other up when we are down as well as celebrate each victory together. We remind each other there is HOPE that more people will speak about CHDs. We HOPE there is more research done so that someone’s child can be saved. We HOPE and believe this CAN and WILL be done!
Sincerely,
Jordan’s Mommy-Tracey Snyder