Meet Lena- story provided by Lena's mom:
Junior and I met in 2009. I already had a 7 year old and we were both working as managers for Best Buy. A year and a half later Lilian came along. Our goal was always to get married but having a house first was more important. In October of 2013 we got engaged. In April of 2014, my position at Best Buy was eliminated. I went from a 65k a year job to unemployment. We were optimistic at first. We figured I would take the summer off and the look for work once the kids went to school - As a retail manager I was never able to enjoy weekends and holidays so I looked forward to that.
In June we found out we were pregnant with Lena. There were NO complications with my pregnancy. I went thru all types of testing because of my age (I would be 35 when I had her). Everything came back normal. Lena came into this world at 9:11am on March 3rd, 2015. She was born on her due date. She was healthy and happy and had her eyes wide open from the minute she was born. 2 days later we went home during a snow storm. Everything was great.
Money was tight so I started sending out my resume and applying for jobs when Lena was about 2 1/2 months. The plan was to start working as soon as possible once she turned 3 months. I had an interview to run a Samsung stand alone store set up for June 10,2015. They recruited me so I was feeling pretty confident.
On June 4, 2015 nothing was going right. I woke up feeling tired. I was "off " all day. We had furniture being delivered that day so I was trying to prepare for that. The furniture came and one part was broken. It took forever to try to fix it so that at least it could be used until the new one could be delivered. Lena just had a bottle so we left to get Lily something for lunch.
It was about 2pm. We went to Wendy's in lyndhurst. I got Lily a happy meal and myself a strawberry lemonade. I was on the Bluetooth with my mother as I pulled out of the drive thru. My plan was to pick up Aiden from school then stop at foodtown to get something to make for dinner. Lily had fallen asleep and I was complaining about the furniture when I heard Lena cry out. Lena is a fairly quiet baby and only cried when somethings wrong. I tried to get Lily to wake up and make sure she was ok. She wouldn't wake up, which is odd seeing she's such a light sleeper. I decided to pull over and check on Lena.
When I did she was turning blue and gasping for air. I ripped her out of the car seat and started hitting her back thinking she was choking. I blew air into her mouth while I called 911. There was a guy walking by who asked if I needed help. I begged him to get someone to help me. Then Lena went limp in my arms and all of the color drained out of her. I was screaming at the 911 operator to help me and he told me to do cpr. I've never done cpr in my life but I swear to you I was doing it with Lena on the front seat of my car before they even told me how to. I stared at her lips the whole time. Finally I seen them turn pink. When I looked up the ambulance was there and I handed her to an emt and prayed.
The emts took her into the ambulance and I didn't know what was going on. I asked if she was ok and the supervisor told me she had no pulse and needed to get to hospital immediately. I was weak. A police sergeant drove my truck with me and Lily screaming the whole way. The chief of police not only drove the ambulance with Lena in it but he also called ahead to North Arlington and Belleville to clear a path. We made it to Clara Maas in 4 minutes.
When we arrived at Clara Maas I jumped out in the parking lot and ran carrying Lily to the emergency room. The first thing I saw was one of the emts crying against the ambulance and a nurse was rubbing his back. I thought she was gone. I saw the supervisor and he told me she was crying. I almost ripped his arm off in excitement. As soon as I got into the hallway, I heard her. I almost collapsed from the relief. She was crying.
Clara Maas had no idea what was wrong so they transported us right to Saint Barnanbas. We got there around 7pm. They had several doctors come see her and no one could tell us what was wrong. All we knew was that she suffered from sudden cardiac arrest and her heart went into vfib. The one dr from Saint Barnanbas couldn't believe that so he called for the actual print out from the ambulance. They set Lena up with a holter monitor and an eeg. I watched her sleep all night. At 7am the cardiologist showed up. He did an echocardiogram and said he saw a "slight issue " with her left ventricle. He said he would call some colleagues in New York and Chop. At 12 noon the nurse told us we were going to Chop. The team was already on their way.
We drove down separately from Lena so we could go home and get some stuff. When we arrived we spoke with Dr. Shaddy. He assured us we would have an answer and solution sooner rather than later. All types of tests were done and everything was sort of a blur.
I don't think we really recognized the magnitude of the whole thing until the nurses started telling us they couldn't believe the emts were able to shock her out of vfib . No one could believe it. We found out later that they originally shocked her with 15 Jules and nothing happened so they did it again with 30 and she started crying.
At chop we found out that her Ekg's showed that she has Wolff Parkinson white syndrome, which is a condition where people have extra electrical pathways in the heart which can cause it to "misfire". They also noted the dialated left ventricle. Her ef% was about 30. They made plans to do a cardiac catheter and an electrophysiology study. The plan was to use the same cath for both. They told us it would take about 4 hours and if they could close the extra pathway,they would.
About 5 hours later they came and got us. As soon as they put the cath in , she went into vfib. They had to do chest compressions and shock her back again. Most people who have WPW have 1 extra pathway, Lena had 3. They were able to ablate those pathways. The hope was that the ablation would stop any issues and instances of cardiac arrest the plan was to repeat the Cath in 2 weeks to see if they "fixed" it.
During the second cath, they induced vfib and her heart went right into it. With that they decided that she would need an ICD for the rest of her life to prevent sudden death from vfib. We were devastated that she would need this but so thankful that it meant getting to have her here.
On June 24,2015 Lena had her ICD implanted. It was implanted in her stomach due to lack of space and options. The leads that go to her heart have additional slack coiled so she will be able to grow some time with it. We're hoping she gets to at least 6 or 7 before it needs to be replaced.
On October 18, 2015 Lena was napping on the floor next to her brother. She started crying uncontrollably. I picked her up and held her for a few minutes and she calmed down and fell back asleep. Later that night we were in bed when we heard her stomach beeping. We called chop and found out that her heart rate went up to 452 beats per minute for 9 seconds before she was shocked out of it. Her meds were adjusted and she has not had a shock delivered since.
Longest story ever short, even though there's a diagnosis for Lenas heart issues, they don't know why her heart goes straight into vfib. They're doing all types of genetics including cascading genetics from Junior and I.
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