Wednesday, September 2, 2015

Dodging the Heart Bullet

When we first found out that there was a chance Kendall was going to have Down syndrome and I spent my two weeks over Christmas break reading, I learned about all of the potential health concerns that come with it, some of which become more prominent with age. About half of all children born with DS are born with some type of heart defect. There is an increased risk of leukemia, sleep apnea, obesity, dementia, gastrointestinal issues, thyroid problems, hearing loss and poor vision. With heart defects being the most immediate concern, we were told that we would have monthly ultrasounds throughout the pregnancy and a 2 hour fetal echo cardiogram to focus strictly on the heart. Often times babies born with DS require heart surgery, many within the first few months of life. The fetal echo would help the medical team caring for Kendall understand what obstacles we might be facing upon delivery.
At about 7 months along we had the fetal echo at UNC. He weighed 1 pound 10 ounces at the time (above picture). It was a super long ultrasound that focused solely on the heart and the blood pumping through it. It wasn't as fun as the other ultrasounds because we weren't looking at any other body parts and I had no idea what I was looking at on the screen. We just had to wait for the technician to finish and then hear from the doctor. When we met with Dr. Stamilo he told us that everything looked great. There were 4 chambers, which was a HUGE relief. That is about the only thing I remember from that appointment. I had read about babies born with less than 4 chambers and open heart surgery was required to literally build the other chambers out of the itty-bitty heart that was beating inside an infant. Knowing we were dodging that bullet was an enormous comfort. We weren't necessarily out of the woods but I was feeling better. All we could do then was wait.
Right after Kendall was born he was taken to the nursery for another echo with a cardiology team. It seemed like he was gone from the room forever. When he came back from the nursery the cardiology team informed us that there were four heart defects that weren't picked up by the fetal echo. There was a PDA, two VSDs and a muscular defect around the right ventricle. The PDA (patent ductus arteriosus) is an opening between two major blood vessels leading form the heart. If left untreated, poorly oxygenated blood flows in the wrong direction weakening the heart muscle and causing heart failure. A VSD (ventricular septal defect) is a hole in the heart that occurs in the wall that separates the heart's lower chambers and allows blood to pass from the left to the right side of the heart. The oxygen-rich blood then gets pumped back to the lungs instead of out to the body, causing the heart to work harder. Kendall had two holes. The right ventricle becomes over enlarged and dilated due to the backup of blood. A cardiology appointment was scheduled for 2 months old to monitor the defects and decide a course of action. Below is the actual diagram I was given by the cardiologist.
The long awaited cardiology follow up was on August 5th. We checked in to the Children's Hospital at UNC and waited. The first step was an EKG. Imagine a tiny infant laying on a bed with electrodes taped all over his body laying perfectly still. I wish I had been able to take a picture but I was too busy holding his arms down. It took 3 people to hold him down without allowing him to move long enough to get a good reading. The reading only takes like 10 seconds but it seems like eternity when your baby is screaming from being held in place. Torture. After the EKG we had to wait for the technician to come get us for the echo. We waited forever. A pediatric cardiology resident came in to talk to us while we waited. I am totally not a selfie person but I am realizing that if I am going to document our adventures with this little guy I have to learn how to take them to reflect where we are, what we're doing and how I'm feeling.
Then it was finally our turn. Once again, he had to lay down and they strapped some electrodes to him, although it wasn't as many as the EKG. Then the echo was performed, which is basically a sonogram of the heart, directly through his chest.
When the echo was complete, we were sent back to our exam room to wait for the doctor. And when he came in he was smiling and chipper and chuckling. He said every single heart defect had resolved itself. All on their own. They were gone. No more holes. The PDA closed. And the right ventricle was no longer enlarged. His exact words were, "Kendall has been released from cardiology." No follow ups. No surgery. Amazing.

Kendall failed all of his newborn hearing screening while we were in the hospital so we were referred to an audiologist for a full hearing test. This took place at the UNC Hearing Center on July 27th, at 7 weeks old. When the appointment was booked my pre-appointment instructions were to not feed him that morning so he would come in angry and hungry. He had to be asleep for the entire test so I would need to feed him right before it started to try and keep him asleep. The test took 4 hours. Yes, 4 hours. I had to sit in a chair, holding him while he was electroded up (yes, I made that word up) and had mini headphones in his tiny ears. If the headphones came out or if he unhooked one of his electrodes, the test had to be paused and couldn't resume until he was asleep and still again.
All of the electrodes and the headphones were hooked up to a computer where the audiologist and her student watched his brain activity. Kendall can't tell us when he hears a sound or even signal in any sort of way so they have to monitor his brain reactions. After the test was over, the audiologist told us that the longer the test runs the better the results. I didn't understand her concept at first until she explained that the test starts with a loud, low bass sound. Similar to a jackhammer. If there is no response to that sound, then most likely there is a significant issue. The longer the test goes on, the higher pitches and frequencies they can test. So after 4 hours, we were happy to receive the news that Kendall's hearing is in the normal range. The audiology report states that there is normal peripheral hearing sensitivity for the frequencies tested. It was recommended that we have a follow up for a behavioral hearing assessment in February. He will then be 8 months old and will hopefully be able to respond behaviorally to a hearing test by turning his head towards the direction of sound, etc.
We know there will be more challenges and more to come but we are feeling incredibly thankful for the child that we have been given and for dodging some major medical complications early on.

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