Jeni's Story  

By: Paul Sorensen  

I don’t believe that I fully realized the gravity of Jeni’s situation when she was initially diagnosed with hypoplastic left heart syndrome. But when the available and limited medical options to save and sustain her life were presented to my wife Jill and me, the life-threatening condition of Jeni’s heart became very real to us.  

Jill and I were without reservation and of one accord in our decision to give Jeni every possible medical and spiritual chance for survival. It is our firm belief that she is with us today because of so many prayers to God asking for his Spirit to superintend the medical technology and surgical efforts that led to her survival against very great odds.  

In one sense, those early days seem so long ago to me now that Jeni is 23 years old. In another sense, they seem like yesterday, because of her necessary daily heart medications, mostly scheduled medical checkups, and involvement in various heart-related functions and activities.

While attending El Rancho Structured School and Camarillo Heights Elementary School, and despite some negative experiences from some students, I am thankful to God for the care and support Jeni received from her teachers while she was in those public schools. She was home schooled during her 7th and 8th grades.  

I commend my wife and her mom, Mary Jane, for trying to establish and maintain a positive home schooling environment for Jeni and her brother, Jon. Subsequently, Jeni returned to public school as a freshman at Adolfo Camarillo High School, but, because of the physical limitations placed upon her by HLHS, she was unable to maintain the required campus schedule in a timely fashion. She transferred to an alternative high school and actually received her high school diploma on schedule from Frontier High School in Camarillo.  

With regard to the physicians, surgeons, and other medical staff directly and indirectly connected with Jeni’s life from birth to now, I have the greatest respect, admiration, and praise. Because they intervened with their knowledge, diligent expertise , and experience, Jeni is with us today, and we pray, according to the Lord’s Will, she will continue to live as normal a life as possible in her circumstances.  

Jeni possesses and projects a very friendly and loving nature with which she has established several friendships over the years. They have, for the most part, been a blessing to her and she continues to cultivate those relationships.  

From the very beginning, my wife and I desired to share Jeni’s story with as many interested readers and listeners as possible. I believe God has directed the communications media to help accomplish this, specifically to encourage and support those families of children with HLHS. Jeni, and many others like her, bear witness that informed surgery on the child’s own heart followed by post surgical care can be a viable option to save the child’s life and maximize their chances for as normal a lifestyle as possible.  

I am grateful to the American Heart Association and Anna Jaworski’s book, The Heart of a Mother for their roles in getting Jeni’s story out, and also to the AHA for assisting my wife to form a support group in Camarillo called “Treasured Hearts” for families of children with congenital heart disease. The group flourished for awhile, but then interest slowly waned and the meetings were eventually discontinued.  

When Jeni turned 16 years of age, we began to establish a “Father-Daughter” quality time together of going out on a special date --just the two of us. We would get all dressed up, choose a favorite restaurant, and spend an evening together. This was the beginning of our tradition we shared on each of her birthdays since then. This special time together has certainly been a truly relaxing environment for casual conversation and even some prayer and Bible reading.  

I would say that Jeni’s independence was becoming more pronounced and that these very special occasions were, in a sense, our acceptance and validation of that fact. Even so, Jeni has said to me, unequivocally, that whatever path God directs for her life, I can be assured that she will always be “Daddy’s little girl.” Jeni continues to remind me of this through her love and we have been and are planning to continue our tradition of father-daughter dates for many years to come.  

There is a great deal of information from e-mails and web sites on the Internet providing access to testimonies from other families and the most recent medical developments in dealing with heart disease in children and adults.  

In trying to sort out the reason or reasons why Jeni was born to us in her condition, I can only say that in His sovereign and providential will for our lives and for no human reason, God chose us to become her parents. In His mercy, grace, and love, we prayed that He would enable us

to raise her up “. . . in the training and admonition of the Lord” (Ephesians 6:4, New King James Version) with an everlasting and a growing love to Him from her heart, out of which all the issues of life flow (Proverbs 4:23). During her very transitional teenage years, we continued to be enabled, by God’s grace and power in our lives, to deal with Jeni in a loving and effective way, that honored and glorified the Lord, Jesus Christ, as she changed from girlhood to womanhood.  

A few years have passed since my last update; my daughter has grown up to be a beautiful, young, married, Christian woman of whom I am so proud. One of my fondest hopes was that Jeni would find a young man who was a believer in Jesus Christ. Nick is the fulfillment of that hope. My prayers at that time were that their relationship would grow primarily in Him so they would end up being eternally committed to each other. Their wedding was the culmination of a cooperative effort on the part of family and friends, and was indeed a celebration of their lives coming together as one in Christ, in whom I pray for their continued growth.  

About two years before their marriage, a logical extension of Jeni’s independent nature expressed itself when she left home and moved into a tiny rented room in Santa Barbara. When she left home, I immediately missed our many times together when I returned home from work and she would greet me with a big hug and a kiss. Also, I missed our times of prayer when she was going to sleep.  

Subsequently, she applied for admission to Santa Barbara City College and secured a part-time job with a local tourist shop in the downtown area of Santa Barbara. She did all this without a car—a lot of her transportation was done through walking or taking the bus. The combination of all these activities was too much for Jeni to bear, resulting in walking pneumonia and hospitalization that forced her to drop out of school, leave her job, and move back home.  

During Jeni’s Santa Barbara experience and after her return home, she was involved in a Christian college group at UCSB called University Christian Fellowship with her then-fiancé, Nick. Both Nick and Jeni were helping to lead the worship team in this group, and I sensed they were gaining in their faith and practice. This encouraged me and increased my joy for them.  

When Jeni moved back home, she secured a job as a box office cashier at Edwards Theaters in Camarillo. During the course of her employment, they promised special job concessions respecting the limitations of Jeni’s heart defect. These promised concessions were never honored. Instead, they had her working eight hour days, standing for most of her shifts, consequently causing her excessive fatigue which forced her to terminate her position. This reminded me of Jeni’s negative school experiences while growing up. The current and gross insensitivity of some people to serious physical impairments to perform normal job duties was demoralizing in this unfortunate situation.  

Knowing that Jeni was always interested in massage therapy, I was very satisfied when she began her employment with Telesis Physical Therapy as an aide. Because they are aware of and honoring the physical limitations of her heart defect, she is performing, to the best of her ability, the requirements of her position. Finally seeing her in a setting where she is comfortable and happy overfills my heart with joy.  

I was very pleased when Nick and Jeni became first time counselors at Camp Del Corazon. I was glad my daughter’s dream to serve in that capacity was realized and it brought much joy into her life. Jeni’s experience as a camper since 1995, and Nick’s pursuit of a teaching career, were definite benefits for the camp. When they returned, I saw pictures of their camp experience, Reinforcing

my pleasure in their accomplishments together.  

My prayers for my beloved and future son-in-law and my dearest daughter were to stay sexually pure and Godly in their unmarried, loving relationship. To signify this beautiful commitment to God and each other, they attended a Christian-based event, teaching abstinence before marriage. At “Silver Ring Thing,” they made a verbal and spiritual pledge to one another to remain chaste until they became husband and wife. Nick and Jeni returned home with silver rings from the event bearing the bible reference from 1st Thessalonians 4:3-4 on them. During a family get together at home, we witnessed them exchanging their rings with each other. I was ecstatic at this intelligent and God-pleasing decision, which, in fact, continued until their marriage.  

Because pregnancy could/would endanger Jeni’s life, she attempted a surgical procedure called tubal-ligation at UCLA Medical Center to prevent conception. This procedure was interrupted when Jeni reacted negatively to the anesthetic when it was administered. The doctors all agreed to immediately discontinue the procedure as she didn’t respond appropriately, started to turn blue, and began going into congestive heart failure. When I heard they stopped the procedure, I felt a great sense of relief because of the possible fatal result in completing the surgery. I pray even though Jeni still remains fertile but blocked with a temporary IUD, if God wills, she and Nick will become parents of their own children someday.  

As Nick and Jeni’s relationship blossoms, I sense a desire on his part to become continually more responsive to her medical, physical, emotional and spiritual needs. He has, does and continues to assume more of Jeni’s needs as the “symbolic torch” is passed on from her parents to him. I was overwhelmed with positive emotions on their big wedding day. I didn’t feel any sorrow or sadness. What I felt, rather, was the realization of a major leap in Jeni’s life. Her life has been one of many ups and downs. To say that my life since Jeni’s birth has been an adventure would be an understatement. The awesome realization of Jeni’s victory over the odds of her survival from a potentially fatal heart disease, and the progression of her life to becoming the young, married, Christian woman she is today, is unquestionably one of the greatest blessings in my life. I am honored to be called her father.  

I give thanks to our families and friends for their support, from day one in Jeni’s life to the present time, and hope this brief testimony will be an encouragement to all who may read it. The following is a running account of how Jeni’s entry into my life affected my faith in God and His son, Jesus Christ. I became a born again believer in 1983, two years before Jeni’s birth, and could be characterized as a young Christian (in a spiritual sense) who desired to attend church and use my musical gifts to edify the saints and glorify God. As the years have gone by, I feel that over the long haul, my faith has increased and even matured to the point it is at today. As an unbeliever, I had no real interest in the things of God prior to the birth of our first son, Don, in 1969, and thereafter, until my conversion in 1983.  

I believe that my coming to Jesus Christ, through faith and repentance, was principally motivated through the urging of the Holy Spirit, after others had shared with me the plan of salvation, as recounted in the Gospel. Along with Bible study, prayer, and fellowship, I feel that other positive influences on my young faith were definitely realized after the birth of our second son, Jon, in 1983, and went into spiritual overdrive with the intra-uterine HLHS diagnosis and birth of Jeni in 1985.  

In general, I recall only supportive and encouraging words from family and friends. However, my wife received a couple of negative opinions regarding surgical intervention to save Jeni’s life. While Jeni was in the operating room all

those times, I received much comfort and peace in my soul from the Holy Scriptures (i.e., Psalm 46:1, Romans 8:28), and from those who were with me. I can say with absolute certainty that without Christ in my life, I would have been much more apprehensive during Jeni’s surgeries.  

I recall sharing Jeni’s situation with other Christians in our church, to encourage them to pray for God’s intervention during these crucial times. Our oldest son, Don, had a couple of friends in high school who lent their presence and prayer support during her first surgery.  

While I realized that students can actually be cruel to each other both physically and emotionally, I was quite distressed by the harassment incidents Jeni experienced in school because of her CHD. Had I known Jeni was experiencing these incidents at that time, I would have counseled her to report them immediately to her teacher, and to pray for God to bring the perpetrators to justice. I firmly believed that the students responsible for such reprehensible behavior, and their parents, should receive a stern warning from school officials about serious consequences from any future incidents of this nature.  

The following is a final update of how Nick and Jeni’s lives are progressing:

In March of 2007, Nick graduated with honors from UC Santa Barbara with a bachelor’s in History and a minor in English. The following month, he began graduate studies through the University of Phoenix Online in order to get his master’s degree in education and his secondary teaching credential. Meanwhile, he works full time as a sales manager at a bicycle shop to support his wife and their cat, Clair. All this will change in the fall of 2009, when he will be able to start teaching high school history as his career, which has been his dream since he was a high school student. This, as you can imagine, keeps him very well occupied.

      Shortly after Nick and Jeni’s wedding, she resigned from working at Telesis Physical Therapy. Because her boss no longer understood the intensity of her heart disease and its limitations, the physical stress of work left her with no choice but to leave. Currently, Jeni is a full time homemaker to her very needy husband. However, once Nick finishes his classes, she has a desire to return to college with the intention of becoming a motivational speaker and share her story with others. She also plans on teaming up with her mother, Jill Sorensen, to write a book about their unique experiences with HLHS.

      Jeni and Nick continue to stay involved with Camp del Corazon as camp counselors and fundraisers. In addition, they continue to participate in various California Heart Connection events like the organization’s annual picnic. This event gives Jeni the chance to share her life story and advice with other families with HLHS children. Jeni also reaches out to other families dealing with congenital heart disease through sites like MySpace and Facebook to encourage and give hope to them in their current individual situations. She is there to answer questions and to provide support, and when geography allows, also visits the families from time to time.

      In March 2008, Nick and Jeni were granted a scholarship to attend the bi-annual Adult Congenital Heart Association (ACHA) National Conference in Philadelphia, PA. This was a terrific blessing to both of them, as they connected with other adult congenital heart disease patients and their husbands, wives, and families from around the country. It was also an incredibly educational experience, as they learned from top cardiologists and surgeons about present issues and future possibilities for Jeni and the rest of the congenital heart disease community. The conference gave Jeni a sense of hope, as she saw that she was certainly not alone with her heart disease. One young woman she met, Taryn Allen, has HLHS and is slightly older than Jeni, an occurrence that is very rare on the West Coast (Taryn was born in March of 1985 and had her open-heart surgeries at Boston Children’s Hospital, as opposed to Jeni’s birth and surgeries in June 1985 at UCLA Medical Center). In the recent months, Jeni and Taryn have grown to be very close friends and give support to each other.

      Jeni has also picked up a very interesting new hobby. As a wedding present, her beloved Nick presented Jeni with a brand new pink Fuji road bicycle so that she could ride with him during some of his training rides. However, Jeni eventually built up her mileage so that Nick ended up having to keep up with her! Her longest bike ride right now has been 20 miles, and as of today she is training for a 30-mile bike ride in my hometown of Solvang, CA. The ride she and Nick will be doing financially benefits different organizations, one of them being Camp del Corazon.

      Lastly, for the past two years, our family has met together as a home-based Biblical church as opposed to attending an institutional church. This experience has intensely changed our lives for the better. We have grown much closer to our Lord and to each other. This has especially brought Jeni and me into a closer relationship than we have ever experienced before.

       I have experienced many spiritual highs during the course of my life with Jeni. Five of the highest ones were her survival after initial open heart surgery, Jeni and her brother, Jon, attending her senior prom at Frontier High School as a couple, her graduation from high school with scholarships, her being fully convinced that the Lord, Jesus Christ, became her Lord and Savior, and her marriage to her beloved, Nick. As awesome as these memories are to me, I am looking forward to a lifetime of more precious moments with my beautiful daughter.

this poem is from Jeni's mom

God has given us three gifts 
of precious love and joys 
My daughter is my butterfly 
and my angels are my boys 
 
HE sent the angels first to us 
to show us how to care 
Loving children with tender hearts 
and kindness they do share 
 
They grew up fast and wonderful 
and then there came the day 
A butterfly was sent to us 
in a most unusual way 
 
Our butterfly is delicate with 
special care required 
Her wings are fragile satin 
and are often very tired 
 
My angels are her heros 
and give her strength in love 
Through them she finds courage 
and I thank the Lord above 
 
Many battles she has fought 
Gods' Will has allowed her to win 
They've taught us much...our precious gifts 
our daughter and our sons 
 
Jeni is our beautiful butterfly 
so pure and meek and mild 
Don and Jon are our sons 
our priceless gifts from above

God has given us three precious gifts

Thank You Lord

HLHS Advice

                               Written By: Jeni & Jill Sorensen

2007

 
My mom remembers the day she found out about my heart defect as if it were yesterday. But, she kind of blocked out what the doctors told her at the time. She didn’t want to listen to the negative things they were saying, she only knew and felt in her whole heart/being, that I would be a Miracle and her baby WOULD survive!  

In 1985 “Hypo-plastic Left Heart Syndrome” wasn't even documented in the medical books yet.  My mom told me that she used to hang out in the UCLA bookstore sitting in a corner on the floor searching all the Medical books for any piece of information written about this congenital heart defect called HLHS. There just wasn't anything to be found.

    

The day I was born, there were 3 other babies diagnosed with similar kinds of heart defects and they unfortunately did not make it. The reason we know this is because the parents of those other babies sat in a circle around our family praying for me while my 1^st operation was happening. (I can't help but feel guilty a little bit...and I sometimes wonder why God chose me to live, out of all those other babies born that day)...

I know God has a plan for my life.  

I want to offer some ideas/advise.... I realize I am not a Mom yet and I don't want to offend anyone... I just want to help in any possible way. I have learned a lot from my Mom and others over the last 22 years and I just want to share what I have learned.  

Never Hide The Truth.One thing I learned from my Mom is that no matter how scary the truth is/was, she would never hide it from me. I have noticed that the more parents hide the truth from their child, the more frightened they are and the less they will trust their parents. Say for instance, your child has to be hospitalized for some reason, and they have to get an IV…. don't tell him that it won't hurt, because that's not true. Instead tell them that it's going to hurt briefly and it's ok to cry.  The pain will be there for only a few minutes and then it will be gone. My mom always told me the truth and what was going on.  That way, I learned to trust and have a peace of mind that God was taking care of me and there is a reason for everything that happens to me.  

Start Educating Your Child At An Early Age. Never think they are too young to learn about their heart defect, ESPECIALLY if they ask questions… I'll tell you why…  I don't know how my Mom did it, but by the time I was 3 years old, I could tell the doctors and nurses the names of all my medications, what they did for my body and I also knew there shapes and colors. If you were to ask me that now at age 24 (almost), about my meds,  I would not be able to tell you anything about them accept that they help keep me alive… LOL. I think that is hilarious.  

Also, before I could barely talk, I would let my Mom know that my heart hurt. I would crawl to the drawer where the stethoscope was kept and I would pull it out of the drawer, drag it across the floor to my Mom and say, "Heart hurt Mommy" in my little baby voice. Hehe.  

So, my point is…that kids are never too young to learn about their medications, limitations, doctors, or anything to do with their heart. On the other hand…don't overload them with too much unnecessary information either. Just give what is needed or asked about.  

Make Hospital Visits Fun For Your Child. During those non – emergency times when you just have ordinary check-ups…make the rounds…Visit friends, doctors nurses, hospital staff, etc.  

Throughout my whole life, my surgeon, my doctors and nurses have played a huge part in my life. I learned at a very young age that all these people at the hospital helped save my life. This has always been very important to me. Every time we went to the hospital, my Mom and I would make an effort to visit the doctors who were involved in my life.  When I saw them, I couldn't help but be thankful for all that they have done for me. It's always been a blast for me to go around the hospital visiting them. 

Also, we would make it a ‘Mother - Daughter’ thing… spending time together. We would have lunch together at the cafeteria.  If I was too tired or weak to walk around, Mom would bring the wheelchair for me. Sometimes after the appointments, on the way home, we would ”Shop ’til we dropped”. haha. It was fun! 

Always Involve Your Whole Family as much as you possible… In the early years of my life, it was hard on my Mom because she was always going back and forth to the hospital with me and away from her 2-year-old son Jonathan and her teenage son, Don. THANK GOD we had all our family to support us because there was a lot of tension and many unknowns.  

My Grandparents, and Uncles were always there to help take care of both my brothers while my Mom had to be with me in the hospital, and while my dad was working full-time. The boys never felt jealous or left out. They were always involved. My mom told me that my brother Jon, said, all he cared about was having his baby sister well again and her coming home from the hospital. I couldn't have asked for more.

So… make it a main priority to spend time with the siblings as well....and have them involved as much as possible. Be sure to explain to them what is going on when they have questions. 

Have A Strong and Loving Relationship With Your Wife/Husband. My mom would fully encourage doing this for the simple reason because… she did not… and she wished she had.  

I personally know of a family that I met through heart camp (I went to camp with their daughter, Daviana.) When Daviana passed away, her Mom took it so hard that she mostly blamed herself and then in the process ended up pushing her husband away because of it. They unfortunately didn't make it and divorced. I'm defiantly not trying to scare anyone, it's just what can/could happen..... Keep an openness with your husband and tell him what you are feeling. Remember that you are not alone and he is as much a part of your childs’s life as you are. 

ALWAYS make time for love, romance and a hug. Hehe. Make an effort to go on dates and just spend time together, just the 2 of you at least once a month.  Why not treat yourselves to a Motel overnight stay sometimes. I'm not trying to get all personal on you....hehe… But it's just Sooooooooooo important to keep your love alive with your husband – stay close and involved. He is your helpmate and support through all this. You are both in this together. 

Back Problems. One thing I have discovered and wish I had known earlier, is why I have had so much back pain over the years. I had open heart surgery on my 1^st day of life and consequently have had chronic back problems and severe back pain ever since. This is because when they opened me up during my surgery, they had to split the ribs (which messes with the back) before they even get to my heart to operate. When they finished the surgery and closed my ribs up, they were unable to match them up evenly like they originally were. So now, it's like my ribs are tweaked on one side and raised at an angle on one side of my chest.  

I just wanted to let you know that some heart patients end up having back pain too as a side affect of their open-heart operations. It might not be as severe for all children, as it has been for me. Our bodies/bones tend to compensate and want to protect the scar by curving inward around the area. The scar tissue makes the body want to hunch over, almost like it's trying to surround the scar. For me, it hurts to even stand up straight, because my scar is sensitive and I feel like I might break open when I straighten up. I would recommend investing in a Swiss ball (the big balls you see at physical therapy offices) and very gently rolling your child on it, on the back. That way, it opens up the chest wall and ribs and will help them get used to stretching the scar out at an early age, so that it won't hurt as much as the body grows. 

Be Positive It's important to focus on what you can do, instead of being depressed about what you can't do.

It was difficult for me to deal with my peers at school sometimes because I often was made fun of.  But other than that, I have always felt proud of who I am, with or without my heart problem.  

There are a lot of sports that even the most serious heart patients can enjoy and even excel at. We might not make it to the Olympics, but we definitely can try the less strenuous sports such as golf, archery, bowling, etc.  

Thank God my mom and I were involved in support groups and a heart camp when I was younger. This has made a tremendous difference in my life.  

Also, try to involve your child in the community… such as the American Heart Walks. We have nothing to be ashamed of. God gave us our heart defects for a reason, and that's because God knew that we are stronger than most others. It helps us understand that if someone doesn't accept us… that it's their problem not ours…we can be proud of who we are and never change just to please others. 

I really hope that this advice has helped and that nothing is taken the wrong way.  
Love Always, 
Jeni  
 
P.S please feel free to email my mom as well. She loves to hear from people and help them as well. She's just like me....or should I say I'm just like her. hehe. 

BustasGirl25@usa.com – Jeni’s   kjsorensen@verizon.net – Jill’s