Miss K's Story

August 8, 2011 started like any other normal day for us. I had my last prenatal exam that morning and had a list of things to get done in the next 2 days before our scheduled c-section on August 10. The pregnancy had gone perfectly. I had a low lying placenta, very close to being placenta previa, thus the reason for a scheduled c-section but Miss K was considered perfect and healthy.

My 2 year old son and I arrived home sometime around 3pm, I put him down for a nap and then tried to lay down and catch some sleep myself. I got about an hour nap in when I felt my water break. I called my Doctor's office and he told me to get to the hospital, I live 30 minutes away from our hospital of choice and with my low placenta he wasn't willing to risk me waiting to see what happened next.

We arrived at the hospital and got checked in and to a room all around about 7:30pm.

The nurse left the room to call my Doctor, she had only been gone a few minutes when Miss K got the hiccups and then the heart beat on the monitor changed and sounded really wrong to us. My husband ran to get a nurse but was met at the door by her returning to tell us she had spoken to my Doctor, she immediately noticed the difference in the heart beat as well and grabbed a second nurse to help her figure things out. They were sure the monitor was broken, it was showing Miss K's heart rate as 120's but by the sounds of it that could not be correct. The nurses then decided to try counting out the beats themselves, they were unable to as the beats were too fast, they came to the conclusion that the heart rate was at least double what the monitor was showing them so they ran for the on call Obstetrician who came into my room with his hand held doppler, we waited anxiously hoping his doppler would read a normal heart rate but were sorely disappointed by a very fast heart rate yet again. He immediately asked where my Doctor was, when he was told they had called him 3 times already and he was on his way the on call OB told them to prep me for surgery and to prep the OR for an emergency c-section and to call NICU and get a team ready. Of course hearing NICU team panicked me quite a bit.

By 8:00pm I was in the OR getting a spinal block and praying my own Doctor would make it before they started surgery. As soon as the on call OB got ready to cut my Doctor rushed into the room scrubbed and ready to go and at about that same time Miss K's heart rate slowed to a normal 120's. They cut fast, they had her out within about 5 minutes. She didn't cry for a whole minute, I waited and when she finally did cry out I cried as well, tears of relief.

My husband left my side to follow Miss K and make sure she was OK. He came back a few minutes later holding her, I kissed her cheek and told her I loved her and then he whisked her away with practically no explanation.

Once I was in recovery my husband was able to show me pictures of our sweet baby girl and he explained that she wasn't breathing well on her own so they had her on a machine (CPAP) and that her heart rate went back up to 280's as soon as she got to the NICU so they administered Adenosine to slow it, luckily it worked on the first try.

Because of my c-section I stayed 4 days in the hospital. Miss K spent that whole 4 days in NICU but never had another run of high heart rate during those 4 days. The pediatric cardiologist told us she had SVT, that she would likely out grow it and that in her case he was sure it was an infection she had caught in utero so he had ordered IV antibiotics to clear up any possible infection. When I was released from the hospital the cardiologist deemed Miss K healthy and ready to go home with me. They trained us on how to use a stethoscope, what a normal newborn heart rate should be, and CPR and sent us both home.

3 days later my husband and I had been listening to her heart with the stethoscope and couldn't decide if it was too fast or just right. She then started to get very listless and limp and wouldn't wake up on her own, when we would wake her for a feeding she'd eat less than 5 minutes and fall right back into a deep sleep. We decided we better take her in to have someone experienced listen to her heart so we took her to our local after hours clinic where they put a pulse ox on her and then rushed us to the ER next door because her heart rate was 280 BPM.

The ER panicked having an infant in distress, especially a newborn with a heart rate that high. They were surprised to find that all her vitals were perfect and she looked really healthy. They called our delivering hospital to get advice and were told to send us to Primary Children's Medical Center. Because her vitals all looked so great they sent us via ambulance rather than life flight.

The ER at PCMC was hectic with dozens of doctors and nurses surrounding our baby girl trying to decide the best plan of action to get her heart to slow. At this point Miss K had woken up to all the commotion and realized she was VERY hungry, she got very upset and her heart rate accelerated even further to above 310 BPM. When this happened they took action immediately, they administered Adenosine at the perfect dose for her weight, it did not work, they then tried a higher dose of Adenosine that also did not work, they gave her Propanolol via IV and waited a few minutes then administered Adenosine at the highest dose they dared use on her little body, amazingly it finally worked and her heart rate slowed back to the 120's. They chose to admit us to the Children's Surgical Unit (CSU) for over night observation and assured us that after 24 hours of oral Propanolol she would be fine and they could release us to go home with oral Propanolol to control her heart rate.

Through that first night Miss K was in and out of SVT constantly, we found that blowing in her face would help revert her heart rate back to normal rhythm almost every time. And then at about the 12 hour mark she went into an SVT episode that would not break using all our usual maneuvers. They finally opted to try Adenosine again, 3 doses later and she was still in SVT so they moved us to Pediatric ICU (PICU) to start her back on IV Propanolol. Miss K stayed in constant SVT for 48 hours straight after that, she never caught a break from it and after 5 rounds of Adenosine the Cardiologists advised we stop trying to break the SVT for fear of causing damage to her heart or brain. They tried Atenolol, Digoxin, Propanolol, and then Amiodarone through her IV, none of these worked to stop or control her SVT. Finally they combined Propanolol and Amiodarone and Miss K's SVT broke. After breaking that 48 hour long episode they would up the doses of Propanolol and Amiodarone each time she had an SVT episode (which was about every 2 hours) until finally after 2 weeks they decided she was at a comfortable point and they started weaning her to the oral versions of both medications.

Through the 2 weeks in PICU Miss K experienced seizure like activity that called for an EEG which showed she most likely was having small seizures so they put her on Keppra, the seizure like activity stopped soon after. She also started showing blood in her stools, countless belly X-rays showed some type of issue but they couldn't see exactly what so they stopped all feeds and kept an eye on her stools and her X-rays. 48 hours later the blood subsided and the X-rays were clear so they allowed me to feed her and see how she did. She did wonderfully and ended up being just fine. They came to the conclusion that the seizures and bloody stools were possibly caused by too much or too little blood flow to her organs during her 48 hour SVT episode. Miss K also experienced 2 runs of V-TACH while in PICU, one run ended up scaring the nurse badly enough for her to call a Code Blue on her thus bringing in a team of 20+ doctors, crash cart, emergency oxygen, etc. Amazingly Miss K was fine and one doctor was able to bring her out of the SVT and end the run of V-TACH without any lifesaving measures becoming necessary.

We were transferred back to CSU after 2 weeks in PICU. Miss K's Propanolol and Amiodarone doses were further adjusted while there. She had less SVT episodes but was still averaging at least 2 every 72 hours. The Cardiologists wished to keep her admitted until she could go at least 3 days SVT free but her assigned Electrophysiology Cardiologist insisted that if they kept her and waited for a 3 day SVT free stretch we would end up living there permanently, he felt she would be fine at home and encouraged them to release her to our care. 1 week in CSU and we were finally allowed to take Miss K home.

At home Miss K was still having 1-2 SVT episodes daily until 2 weeks after release when we went to visit her assigned EP Cardiologist for follow up. Her Cardiologist explained Miss K's diagnosis of PJRT (Persistent Junctional Reciprocating Tachycardia) and he further adjusted her doses bringing Miss K's dosing of both medications up to triple the recommended amount for her age/weight. After that visit Miss K started only having SVT about 1-2 times every 3 months.

At 12 months we opted to try taking Miss K off of the Amiodarone. We had not adjusted her dose since she was 5 months old and she had gained significant weight without experiencing more frequent SVT so rather than doing a slow wean we quit cold turkey. Miss K did wonderfully without the Amiodarone until about 4 weeks later when she began to have SVT episodes 2-3 times a week. Upon calling her EP Cardiologist we decided not to go back to the Amiodarone if we could avoid it. He put her on Digoxin in hopes of it working this time around. Miss K only had 3 more SVT episodes after starting the Digoxin, both brought on by high fevers.

Miss K has done quite well the last few years.  She stayed on 3.2mL Propranolol 3 times a day and 1.2mL Digoxin 2 times a day until she was 4.5 years, at this point she started having some suspected breakthrough SVT.  We talked about scheduling ablation at that point, her EP was all for it, but we just didn't feel ready yet.  We adjusted her dose to 3.5mL Propranolol, it worked for about 6 months then she started having more obvious breakthrough so we adjusted her Digoxin to 1.5mL, this seemed to do the trick but at that point we decided ablation was right and we got her scheduled for December, 2016.

Miss K went off all medications a week before ablation, she had a lot of ups and downs emotionally, some really fast, but not SVT, heart rates, she was miserable coming down from medications she had been on her entire life.  But ablation day came and everything went very, very well!  She went into SVT immediately for the EP, he found two pathways very quickly, they were both on the right side of the heart, which is an ideal location, he used cryo (freezing) ablation in 5 different locations to make sure he truly got it, she was in and out in 3 hours total.  Recovery was a breeze, she had to lie flat for 5 hours but did well, and was released quickly after her 5 hour mark and a nearly perfect EKG, the best EKG we'd ever seen from her.  We are currently 8 weeks out of surgery and now that all the medications are 100% out of her system, she is getting more and more used to functioning without them, and she has been SVT free the entire time.

It was a major shock seeing Miss K's true colors after stopping medications.  Having been on them her entire life we had no idea that we were suppressing her true personality with them.  She was a spunky spitfire before but now, oh wow, she is full of life, full of more energy than we can handle, a completely different, energetic kid!  We see the EP in 2 days for her follow up, hoping the EKG shows she's doing as great as we think she is.


  1. hi, I am so glad I found your site! My daughter Maddy was born with the same condition. I was unaware of the fast heart rate but by the grace of God we had her first well baby appt. on the day it was discovered. She was 10 days old and was in congestive heart failure when it was discovered by her Doctor. Off to the hospital we went and they could not break the SVT. I was told to prepare for her pass away :(. She had to be intubated and her Cardiologist worked frantically to save her. Every time she would convert she would go right back into SVT. Needless to say, after they decided to lifeflight her to another hospital to "paddle" her heart, it converted to an accept rhythm. I too spent endless days in the hospital with her and was in a constant worried mode. I decided against her cardiologist to have the ablation done. Her proceedure went off without at hitch and to this day she has not had an episode. I highly recommend the procedure. The "one" thing I am worried about was her long term use of Amiodarone. After her lab tests returned with liver damage and thyroid function off the charts, I elected for the ablation. I am trying to find any and all research on the long lasting effects of the medication. I would love to pick your brain and see if your daughter has any of the same symptoms as mine?? my email is sha75tin@gmail.com

    Thank you!

  2. Thank you for sharing your story..I was in tears just thinking about what you all went through but I praise Jesus for bringing you through it and that Miss K is doing well! Our 4th child, a little girl, was born with SVT and although she hasn't had a breakthrough since she was 2 weeks, we still have her on Propranolol 3x daily at 0.4ml each dose...she is quite sleep though which concerns me. She sleeps 10 hours at night and is only awake about 3.5/4.5 hours per day. We've talked to her cardiologist and they said that if she continues this sleep pattern, we will have to put her on a heart monitor. She's the sweetest, easiest going baby that we have had and I'm thankful each day that she is here and healthy! Thank you again! Mackenzie

    1. Mackenzie I am so happy you have found our blog :). How old is your baby girl? When Miss K was an infant she slept A LOT, she would have slept 12+ hours straight through the night if we could have let her, as it was we had to wake her for Propranolol once every night but she would go right back to sleep every time, she also took 2-3 naps a day until after 9 months old when she dropped to 2 naps a day, we got to change her Propranolol dosing from every 8 hours to 3 times daily allowing her to sleep through the night around 8 months old and from then until just after 15 months she would sleep 12+ hours straight, around that same age she dropped to just one nap per day. As hard as it was having such a sleepy baby the "new" norm is so very much harder for us! Since about 15 months she started with medication induced insomnia, we're thinking brought on by the combination of Propranolol and Digoxin. Since that time we have had to deal with our sweet girl refusing to fall to sleep until very late hours, though occasionally not falling to sleep at all, and almost every night she will wake around 3 or 4am and roam the house playing and pestering her brothers until about 6 or 7 am when she will finally climb back into bed and relax again sleeping until I force her to wake for her medications around 9am. To go from a great sleeper to a non-sleeper has been so rough! Hang in there! I hope you can find answers soon, though as far as I know from our experience there likely isn't anything to worry about, it's likely just medication side effect that she may get over soon enough, as long as she's awake enough through the day to eat a good amount :). I am on Facebook if you would like to find me I'd love to "friend" you :).