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Our son, Benjamin was born with a fairly rare heart condition, called Wolff-Parkinson-White Syndrome. We're very thankful that our discovery of Ben's condition ended on a high-note, but it certainly wasn't the ideal way to start life as first-time parents.
Our Little Heart, Benjamin
No one ever mentions how birth stories can tend to be a little over the top. At least that’s how I felt after the dust settled from our unexpected experience. I remember it took about 3 months before I sat and thought to myself, “What just happened?”
I wrote a bit about our experience in our first blog. Within our story, I eluded to the intense experience of how we learned that our son was born with Wolff-Parkinson-White Syndrome (WPW).
It’s an arrhythmic heart condition that causes the heart’s electrical impulses to create irregular or fast heart beats, and they can happen without cause and without notice. As described on the American Heart Association website, the symptoms of arrhythmia can feel like “fluttering” and are actually common.
The difficult part is that since they’re often infrequent, they tend to be undetectable and require the patient to undergo several levels of testing to properly diagnose the arrhythmia and finally treat it before it gets dangerous.
Arrhythmia in an infant is a whole different story.
Babies don’t have the option of letting someone know they’re feeling a flutter in their heart. Physical symptoms of a fast heart beat on a baby are almost non-existent to the naked eye.
Although for me, it was all too vivid, and still is.
I can still recall his irregular breathing pattern, his lack of appetite, his seemingly perpetual sleepiness, the random bouts of inconsolable cries of discomfort, and the one symptom that no one else could notice was the change in his skin color.
The morning after Ben was born, he stopped breathing long enough to have his lips turn blue and was rushed out of our arms and into the NICU. He was there for 5 days before we were given the diagnosis that he had suffered a patent ductus arteriosus (PDA), or a delayed closure of his heart’s ductus arteriosus.
In short, ductus arteriosus is a hole in a baby’s heart that is normally open while in the womb to pump blood through their body, while skipping their lungs, and typically closes within the moments the baby is born, but may also take up to a few days.
The first night we came home without Ben was the deepest pain we had ever experienced together.
We sobbed in each other’s arms, and prayed for peace and comfort.
Needless to say, we were beside ourselves when we were given the gift of taking him home within days of his scary experience. It was a day after Reece’s birthday. We celebrated with a trip to Chik-fil-a’s drive-thru and ate in the backseat next to our little Ben.
We enjoyed our baby at home with us for the next 5 days. The next time we would see a doctor would be at Ben’s follow up appointment to see his pediatrician.
The Sunday before his follow up appointment was Father’s Day. Our parents took turns holding Ben and carefully passed him around all afternoon. We had difficulty keeping Ben calm and thought maybe it was because of the unusual number of people holding him. We spent a considerable amount of time trying to feed him, but he wouldn’t eat.
That was the first instinctive moment that made us worry. Ben is an eater. Baby can put it down. Something definitely wasn’t right.
Our worriment grew through the evening, and seemed unbearable through the night and into the morning. We hesitated on taking him to the ER because we figured it was normal baby fussiness. We wondered if he was collicy, or uncomfortable. All we knew was that he just didn’t seem well, and we anxiously awaited daylight for the chance to rush him to his 8:30am appointment.
My mom is a registered nurse and I’ve grown accustomed to depending on her expertise on all things regarding health. We had previously asked her to be there at the appointment to help us navigate the whole experience. She couldn’t tell anything was wrong with Ben, so we felt a sense of relief that maybe it was part of the new-parent-nerves.
She couldn’t see that Ben’s lips and skin had changed color and that he was oddly still and breathing irregularly.
I’ll never forget the expression on his doctor’s face as he listened to Ben’s heart. He turned to us and said, “this baby needs to be in the ER right now.”
My heart dropped.
He had my mom listen to Ben’s heartbeat. My mom’s face changed. We ran across the street to the nearest ER, with Ben in Reece’s arms.
We were taken in almost immediately, but once we got back there, it was chaos!
Several nurses and techs ran in and out of the room. Some trying to give him oxygen, others trying to get his pulse, but his heart beat was too fast for the machines to capture it.
After a while they finally got a pulse, 315bpm.
A baby’s heart rate tends to beat at a range between 120-160bpm. In that instant, one of the nurses took Ben from my arms and ran out of the room to a larger area with more machines. That’s when I finally broke and nearly fell to my knees, sobbing in desperation with my mom and Reece by my side crying with me. I couldn’t process what was happening.
3 doctors and an innumerable amount of nurses rushed to Ben’s room. We sat on the side holding each other, waiting for the madness to end, but only wanting it to end with Ben still alive. My mom is a cardiac nurse, so she was very familiar with what the nurses and doctors were discussing. She later mentioned that they had been carefully calculating the proper dosage amount for a medication that is usually administered to adult patients with the same fast heart rate.
We didn’t know it at the time, but it was an incredibly risky situation they were dealing with.
At one point everyone stood in silence as they watched one of the doctor’s administer the medication. Reece and I were still on the side, unable to see Ben. According to my mom, Ben had turned blue and she could tell they were losing him.
She came to my side and began praying intensely, while crying. My mom is not a crier.
We would later learn that the right side of Ben's heart had began to tire out, so his body was only functioning with one side of his heart, but it wasn’t properly pumping out blood to the rest of his body.
Everyone shouted in excitement, “YES!”. It worked. The medicine brought Ben’s heart rate down.
The room began to clear out and several nurses pushed us toward Ben’s bedside as they walked out. Ben’s eyes were open and actively looking around. The level of joy could be felt within that moment.
It was a beautiful moment. I don’t think we ever prayed for anything that intensely before.
From there, PICU nurses from Loma Linda Children’s Hospital came by to pick up Ben in an ambulance to transfer him to their specialized hospital. Not long after, we were in our own room in the children’s cardiac unit. We spent the next few days at the hospital waiting for a team of doctors to diagnose Ben’s condition.
Reece and I were given the chance to express our faith to all concerned family and friends. We were given the mic to speak on what kept us above water. We were emboldened to praise God in the midst of the chaos. A few questioned us, others encouraged us, but at the center of it all, we repositioned all eyes to look upon Christ with us.
It wasn’t about what we were doing to keep ourselves functioning, it was about how God was infiltrating this worldly, painful moment and bringing peace and clarity, holding us intact, keeping us afloat and thriving.
He was giving us all that we needed and all we did was lean into it.
On Day 3, doctor’s speculated that Ben had WPW and that the arrhythmia he was experiencing was a supraventricular tachycardia (SVT) episode.
Over the remaining days we were trained on how to administer Ben’s liquid medication that he would use for his first year of his life. They spoke positively on the possibIlity of Ben growing out of his heart condition by his first birthday.
They also described how we could help bring Ben’s heart rate down using vagal maneuvers in case his heart broke into another SVT episode at home.
Vagal maneuvers for adults are easy, but not as fun for infants.
They described how we could take an ice pack and apply it to his nose and forehead to trigger his heart to get back on track. I’m still dumbfounded by how it all works. That night we witnessed nurses performing the vagal maneuver on Ben while his heart went into SVT, and it was gut wrenching to see Ben’s tiny body react to the ice pack being held on his face.
We were finally able to go home with Ben and spent the next 4 days walking on egg-shells, worrying about if or when his heart would go into another episode. We checked his heart rate regularly with the stethoscope they gave us.
July 1st was the day.
I remember hearing his irregular breathing pattern as I slept. I forced myself to wake up and check his heart rate.
It sounded like nothing I’d ever heard. I was stunned. “Could this be it? Is this really happening?”
I turned to Reece, who was sound asleep, and regretfully woke him up with terrible news. Ben was in SVT, again.
We applied the ice to Ben’s face for 10 seconds, but nothing happened. We tried another 2 times before we called 911. The paramedics quickly got a reading of 311bpm and drove us to the nearest hospital. After about 30min of trying to get an accurate heart rate, one of the ER doctors applied the ice to Ben’s forehead and his heart rate went down. We were able to go home that night, only to be back in the same ER with the same doctor successfully performing the same technique 2 days later.
We grew frustrated with our inability to successfully lower Ben’s heart rate at home.
Another 2 days passed before we were back in the ER, but this time 3 doctor’s were unsuccessful in lowering Ben’s heart rate with the ice pack.
After 30min they tried administering the same medication that was previously given to lower his heart rate. They tried finding a sturdy vein, but because his heart wasn’t properly pumping blood out to his body, they couldn't catch a vein long enough to inject the medicine.
Our poor baby was poked and prodded for nearly 2 hours before an angelic nurse took her turn on getting a vein on Ben’s foot, and successfully got the medicine in. The PICU doctor came in and got another vein started on his other foot, just in case the other vein were to fail out.
Finally! But the day had just begun.
Ben’s heart went into another SVT episode, but they were able to control it with medication. They called a Cardiologist to assess Ben’s heart and decide next steps. While she examined his heart with an echocardiogram, his heart broke into another episode.
She was thrilled!
She turned to me and said, “You know what this means? We have an answer!”
She explained that the specific rhythm that the machine recorded was the one thing she needed to help her pinpoint exactly where the rogue electrical pathway was coming from, and confidently concluded that Ben had WPW. They were able to create a targeted action plan to help manage Ben’s heart condition.
We were transferred to the PICU after that. Ben’s heart went into SVT 27 times after that initial episode.
We were drained and exhausted. We were at our wits end.
They were able to stabilize Ben’s heart rate by adding on another medication to his current regimen. This one was a little trickier. He had to take it on an empty stomach, so that meant he couldn’t eat for an hour before we gave it to him and he couldn’t eat for 2 hours after we gave it to him. The other medication had to be given every 4 hours and this one had to be given every 3 hours.
For an infant whose only function is to eat, sleep and repeat, this felt nearly impossible.
We stayed in the hospital for a few more days until Ben’s heart was completely stable and adjusted to the medication. Unfortunately, Reece’s paternity leave only lasted for a few weeks, so he dealt with the task of masking the realities of life at home while he went back to work.
I had been battling with the notion of wondering what God’s will would be for our son. Feelings of desperation and frustration seemed to always be on the cusp of our shoulders.
But it was during the moments that we were given the chance to speak about the effects of this experience with our friends and family that we were once again reignited with the truth and promises of God.
He would never forsake us, His Will is perfect and good, in this life there will be trials and tribulations but to know He is with us, and that He has plans to prosper us. We were surprised at ourselves, and knew that God was providing us the strength and sustaining us as we chose to stand boldly to glorify Him in the midst of our storm.
We left the hospital that week feeling confident in the road that God had placed us on. We were certain that he would carry us through every moment on our new journey.
We faced ups and downs that following year, but it was all worthwhile once we received confirmation in May, one month before Ben’s 1st birthday, that he would be free of his medication.