Jill Sorensen writes about Jeni from her perspective.
Paul & Jill – We are the parents of Jennifer (Jeni) Ellen – newly wed – who married her wonderful husband Nicholas Christopher in 2007.
Jeni with mum just after she was born in 1985
Jeni was born at UCLA Medical Center in Los Angeles, CA at 1:20pm in the early afternoon. We were originally scheduled in the delivery room for 7am but we were bumped several times because of other dire emergencies. Much later that day we found out that two other babies were born with the same kind of heart defect as Jeni’s – Hypoplastic Left Heart Syndrome. But sadly and unfortunately neither survived.
Two months (8 Weeks) prior to Jeni’s birth, she was diagnosed with this heart defect called Hypoplastic Left Heart Syndrome at the Genetic Institute in Los Angeles. At that time, I was informed that Jeni’s chances for survival were next to none and that we had three (3)choices/options:
- Let our sweet Jeni die… with no intervention… (“compassionate care”); she may live a few hours on her own.
- Heart Transplant — finding a perfect match, which unfortunately may take too long, or
- Perform two open heart surgeries to keep her alive — The first operation, called the Norwood Procedure (usually done at birth) and the 2nd operation called the Fontan Procedure (usually done around 2 years old). Both involve rebuilding/restructuring parts of the heart.
Jeni at UCLA Hospital.
Jeni’s Apgar scores were 9 and 9… 10 — being the best. I think Jeni had great multitudes of strength on her side. All throughout my pregnancy and ever since the day we found out that she would be “our little girl”… (through Amniocentesis) we called her by name “Jeni”, even though she was still inside of me. I can remember when I used to say that she was moving around so much and sooooo active that she must be in there climbing trees.
I would often talk to her while I rocked her/us… in my favorite rocking chair… I sang to her, recited rhymes and read short stories to her, because I knew she could hear me. Then when she was diagnosed with her special heart defect, I explained to her that she had a heart defect but she shouldn’t be scared and not to fear the unknown… she must be strong, for God is near and I knew that He would give her the Strength, the Will, and the Chance to Live, and we would always be here to help her through the rough times.
Her response to me was, “Don’t stress, Mom. What ever you do… Don’t Worry, Be Happy, I’m going to be fine… I’m in here getting stronger and stronger, and by the way, I’m notclimbing trees… I’m running on the beach catching the waves and I’m chasing beautiful Butterflies. I can’t hardly wait to see all of you and I Love You All… I’ll see you soon…”
One of the best parts of being in a larger learning hospital like UCLA, was that they were allowing my sweet husband Paul into the delivery room with me, even though it was going to be my surgery and his daughter’s birth. Having Jeni’s Daddy in the delivery room… finally… able to witness the birth of his only daughter. It was his first time to witness one of his children’s births, due to unforeseen circumstances in the other two births of his sons. It was such a blessing for me to have him there!
Jeni weighed in at 7 lbs. 12 oz. and her length was 21-1/2 inches long. Her original due date was calculated for July 7th… but because of her heart defect, she was to be delivered 2 weeks earlier than planned by caesarian-section (C-Section).
Her first open heart surgery was performed just a few hours after her birth by staff and team of cardiologists originally from Boston, MA., headed up by Dr. Hillel Laks, Pediatric Cardiothoracic Surgeon. My obstetrician at UCLA, Dr. Tabsh recommended that I be delivered by C-section early, because he did not want Jeni to go through the distress of the actual birthing process so that she would not wear herself out.
At UCLA Treadmill Test with Holtor Monitor (look how big they used to be!!!)
Let me back up a little bit now… About 10 weeks prior to Jeni’s birth, I was being seen by my OB-GYN, Dr. Robert Corlett, in Santa Barbara. I was 41 years old and this was for a routine/regular check up. While he was examining me he was listening to the “fetal heart rate” and he mentioned that he thought he detected an irregularity in Jeni’s heart beat. We already knew that we were going to have a baby girl because of the amniocentesis and ultra sounds that I previously had done, so Dr. Corlett actually called her by name. He said; “I think I hear an irregularity in Jeni’s heart beat but ‘don’t panic’, lets wait a couple of weeks and then we’ll see if I still detect it at our next visit”. “If I still hear an irregularity, I’ll send you to a heart specialist down in the Los Angeles area at the Genetic Institute”.
It’s a good thing my best friend Louise came along with me and was there with me during that crucial visit that day. She had come along to help me watch and take care of my son Jonathan (then age 1-3/4) in the outer waiting room, while I was being examined. After we left the office, and we started to approach the elevator, I nearly collapsed. I guess everything started to sink in. I quickly found a bench and I just sat there for a few moments and cried silently. I didn’t want to frighten Jonathan. Louise encouraged me to pull myself together and I immediately started to silently pray for God’s mercy and strength to help support us through this scary and unknown time and whatever the future might hold for us.
At this point in time (1985), we lived in Santa Barbara and they didn’t even have a Pediatric Intensive Care Unit (PICU) at Goleta Valley Hospital or Cottage Hospital where I would have delivered Jeni. Thank God, Dr. Corlett was honest with me and admitted he didn’t know what exactly was going on and realized I should go to another source like a heart specialist to seek the necessary help for our baby. Otherwise, the chances of her survival without a PICU would have been very slim.
Well, waiting those two weeks was excruciatingly unnerving. I can safely say that the unknown is what we fear the most, and the waiting is even harder on ones nerves.
On top of all that, we experienced a recent burden of death in our family. My brother Tommy’s baby—our new niece Kristen, 3 month old, had died of a heart defect. She was born with (TGA) Transposition of the Great Arteries, ASD, VSD, and a leaky valve, compounded by a low birth weight of less than 5 lbs. and she was a poor “thrive to live” baby. She wasn’t given much of a chance to live. She was very lethargic, weak, couldn’t bear weight on her arms or legs, had no strength to nurse or suck from a bottle and failed to gain weight. They wanted her to become stronger before they would operate on her. But she never did. In the end they finally operated and did the banding on the leaky valve when she was 3 months old. She survived the operation… but within a few short hours… she passed away… in her Mother’s arms. Her lungs had filled up with fluid and she went into Congestive Heart Failure. We were all heart broken.
Then hearing that I also would have a baby with a heart defect and experiencing all the unknowns, just had to be in God’s Plan.
I believe the decision (by my gynecologist Dr. Corlett) for me to go to the Genetic Heart Institute in LA, which later led to the diagnosis of Jeni’s rare heart defect by a cardiologist, Dr. Roberta G. Williams, who just happened to be at the Genetic Institute that day, and the timing of the surgical team including Dr. Hillel Laks just recently coming from Boston and arriving at UCLA… not to mention, just in time to diagnose and perform Jeni’s surgery. This just had to be His Divine Plan… Without HIM, I know Jeni would not be alive and here with us today!
Wrap-Up: They took Jeni by caesarian-section (C-Section) about 8 weeks prior to her due date, as the doctor didn’t want her to go through the stress of labor and wear herself out. The original plan was to wait a few days before doing the Norwood, but unfortunately she started to go into distress much sooner than they anticipated and the operation was performed within the first 24 hours of her life… Dr. Hillel Laks, the surgeon, along with his fellow team members and all the nurses and staff at UCLA, worked on Jeni for well over 9 hours… They were all instrumental in saving our sweet daughter’s life. Those long hours seemed like an eternity… But…
“We Believe In Miracles” and Jeni is ours… She is our Pioneer Woman!
* Born: June 25, 1985
* Diagnosis: Hypoplastic Left Heart Syndrome (HLHS); diagnosed 8 weeks before birth
1) s/p Norwood Procedure 1st day 06/25/1985;
2) s/p Fontan Procedure 1-1/2 yrs. 12/11/1987;
3) s/p Pacemaker Initial Implantation 3 yrs. 02/23/1989;
4) s/p Pacemaker (1st Replacement) 9 yrs. 07/25/1994;
5) s/p Radio Frequency Ablation (RFA) 9 yrs. 12/01/1994 for ACT/SVT’S;
6) s/p Radio Frequency Ablation (RFA) 11 yrs. 05/01/1997 A/Flutter;
7) s/p Pacemaker (2nd Replacement) 14 yrs.10/02/2001
8) s/p 3rd Pacer Replacment 07/28/2008 age 23
|Getting an EKG at UCLA
| After 1994 Pacemaker Surgery
||After 1994 Pacemaker Surgery|
| After 1994 Pacemaker Surgery recovering at home
with breathing apparatus
|Jeni with Dr. Kathleen Maginot and Dr. Roberta Williams|
|Jeni in Pacemaker Clinic with Janey and Dr. Guzy||Jeni on Graduation Day|
To read the rest of the family’s stories click on the links below:
Personal Story from the perspective of Jeni herself.
Personal Story from the perspective of Jeni’s Father.
Written by Jill Sorensen
Photo’s used with permission from Jill Sorensen