Any moms of kiddos with PJRT?

Daphne - posted on 01/13/2013

Hi there I'm new to the group and glad to find you all! We found out that my grand-daughter had PJRT before she was born. My daughter had no problems during pregnancy until she was 35 weeks pregnant. We were at a routine sonogram check and they noticed the babies heartrate was beating in the 190's. Immediately they admitted her for further monitoring. We stayed at the hospital all day until that night the doctor us that we needed to go too Vanderbilt hospital in Nashville, TN. The babies are heartrate was not going down which meant she was in distress. We went to Vandy via ambulance where she was once again monitored. An sonogram was performed by one of the cardio Dr's which confirmed her irregular heart rhythm.
They induced my daughter hoping that she would deliver natural where they could then treat the baby for the heart issue; however, the babys heartrate dropped and my daughters placenta ruptured which warranted an emergecy c-section. When the baby was delivered they werent able to pass the suction catheter down to suction any secretions that she had. An xray confirmed that she also had Trans-tracheal-esophageal atresia. She would need surgery to reconnect her esophagas and trachea to the right places. However, due to her heart problem they werent able to do the surgery. The dr's had to get her heart stablized before they could do the repair. They tried many attempts to convert her heart to a normal rhythm with no luck. After three days of trying Amiodorane and Flecanide her heart finally started to respond. Her heart rate decreased to the 160's which wasn't where they wanted it but he dr's felt like it would be okay to do the surgery because if for some reason my grand-daughter coded they wouldn't be able to ventilate her do to the atresia. This was the most scariest time when we could have lost our baby! With many prayers the surgery was a success and repaired fully. However, the PJRT still remained. It took several weeks to get the right dosage but finally they were able to get her heartrate down to normal. She is now almost 7 months old and still takes the two heart meds everyday to keep her from having any episodes. Aria goes to the heart Dr this Weds and they are going to evaluate her condition to see if they can start to decrease her meds. We are hoping that her condition will just go away however we have been told that she will probably have to get the ablation procedure done eventually. Im thankful there are drugs that can control this problem however it is scary to think that other problems could arise due to the side effects. Has any of your children had or will the ablation procedure and if so was it a success?

Katrine - posted on 04/28/2012

Hello Amanda! My son is now 4 1/2 years and he has had the PJRT diagnose since birth. He is taking flecainide and metoprolol twice a day and he is developing perfectly normal. We can see no signs of it when in tachycardia, so we use a stethoscope or only the hand once a day. The medicines works fine, no signs of serious side effects. We are heading for an ablation as late as possible, we hope he reach 20 kg before we have to do it. I can recommend this study:

http://www.ncbi.nlm.nih.gov/pmc/articles...

as you see it is a good prognose of being well after ablation. Good luck to you!!

Best wishes

Katrine

LaCee - posted on 03/29/2012

I LOVE that I just found this post! I'm hoping the two of you are keeping up with it! You are the most recent "stories" I have been able to find on this subject. My daughter was born with PJRT, we had no idea until my water broke and her heart rate shot to 280 bpm, from there we went through a very long month in the local children's hospital getting her on the a good medication combination that would keep her heart rate at a steady and normal rhythm. My daughter is like Joanne's son, she does not show any signs that she's in SVT, the only way to know she's having an episode is if I feel it when my hand is on her chest or with a stethoscope (we have 2 at home and keep them on hand at all times). She's now 7 months old, she's been taking Amiodarone and Propanolol since she was 2 weeks old. We're praying we get to take her off the Amiodarone at her next Cardiology visit in two weeks, it has some really nasty side effects that we've had to watch for and do blood work to test for since we put her on it and it scares me to death. I have a blog for her that you are more than welcome to visit :o). www.thestoryofababywithsvt.blogspot.com

Joanne - posted on 02/16/2012

Hi Amanda, my son who is now almost 3, has PJRT. He is a fraternal twin and when we went in for a routine ultrasound at 36 weeks they detected his high heart rate, couldn't do anything since he has a twin, so we had an emergency c-section. He was in the NICU for 10 days and was diagnosed. His brother has no heart trouble. He has been on propafenone 2x a day since birth and has managed quite well. He doesn't exhibit any signs so I don't know unless I am holding him and can feel his heart. We have done a few trials to wean him off the meds but they haven't worked. His last holter showed 3 episodes in the 24hrs, but of short duration so we are supposed to be stopping his meds today and doing a holter in 2 weeks to see how he does. However, he has a cold with a fever and his heart is pounding so I don't want to take him off just yet - I was searching online for info and found your post. I'll call the Drs tomorrow. One thing I worry about is letting him cry for a long time or get hysterical (for example, at bedtime when he doesn't want to go, sometimes I want to just let him cry or yell but I am nervous about that) - have your Drs. said anything? He plays the same as his twin and has taken his meds like a champ all along - except this week suddenly he is refusing to take them. Clamps his mouth shut and pushes me away - I hope it is because he is sick, not a continuing thing. I also worry about long term effects of the meds, also about taking him off prematurely and his heart gets worn out. If he needs it we would consider an ablation but so far we are not at that point. Do you have any trouble getting your daughter to take the meds?