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