Heart Story – Little Miss K

This brave heart mom shares her “Heart Story” with us in an emotional account of how their daughter’s CHD was discovered by chance – which in the end saved her life. There is hope after diagnosis, and this family is proof of that! Little Miss K’s CHD went undiagnosed through the entire pregnancy, showing how important it is to be vigilant immediately after child birth. Not every CHD and heart condition can be detected by ultrasound. 

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. A few medical reasons of my own called 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.  Finally they found a medication “cocktail” that made Miss K’s SVT break. After breaking that 48 hour long episode they would up the doses of medications 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.  One of the medications they put her on was not ideal for any age, it has a lot of high risk side effects and is quite a scary medication, we were heart broken to be told she would need to take it for at least a year.

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 medication 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 dangerous medication. 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 it 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 same medication if we could avoid it. He put her on a safer medication in hopes of it working this time around. Miss K only had 3 more SVT episodes after starting the new medication, both brought on by high fevers.

Miss K has now gone over 1 year SVT free taking medications throughout the day.  We feel our mischievous, very active, smiling, sweet, snuggly little princess is doing wonderfully and things are looking up for her!

Before our experience I had never heard of CHD’s, I had no idea how many babies were born with one.  I am terrified to say that if my little girl hadn’t of gone into SVT while in utero and hooked up to fetal monitors we never would have known she had a CHD, our hospital did not include a pulse ox test in the newborn screening at the time of Miss K’s birth.  If we had been sent home after her birth without knowing she had this condition we never would have known about the signs of a CHD and we never would have known to take her to the hospital when she started acting listless and overly tired, I would have thought it was normal newborn behavior, it is fact that Miss K would have passed away in her sleep that night we ended up in the hospital or the next night and we never would have known why.

– LaCee

You can continue to follow little Miss K’s journey on her blog at The Story of a Baby With SVT.