Heart Stories

If you would like your "Heart Story" published here, please email me at KimberlyFavero@yahoo.com.  

Heart Stories

Born 06/11/2010- AVCD
Corpus Christi, TX                                                                 

I found out I was pregnant when I was seventeen. I was terrified at the thought of being a mother, when I was still a child myself. Then when I was four months pregnant I found out something that would change my life forever. During a routine ultrasound, I learned that my daughter, Kaylee, would be born with a congenital heart defect, called a Complete Atrioventricular Canal defect. At the time, I didn't even know what a congenital heart defect was. I was so scared and worried for my daughter’s health.

Kaylee was born June 11, 2010. She was as perfect as can be; ten fingers, ten toes, cutest little chunky cheeks. By looking at her, you would have never guessed that she had a serious life threatening defect. As soon as she was born I gave her my kisses and loves, and then she was whisked away to the NICU, where she would stay for four days. It was a horrible feeling to have someone, who was a part of me for nine months, kept away from me.

I was so happy when Kaylee came home but the thought of surgery in the future haunted me. Once a month, Kaylee visited her cardiologist, each time adding more medicines as Kaylee's heart function decreased. On October 26, 2010, at four months old, Kaylee received her open heart surgery. She spent one week in the hospital and it was the longest and hardest week of my life! Not only hard for me but, of course, hard for Kaylee. Seeing your baby girl like that is not something that any parent should have to endure. And it is definitely not something that any child should endure.

Since Kaylee's surgery, things have really been looking up for her. She is gaining weight wonderfully and she is eating well. Her heart function has improved immensely. She has a little leakage in her mitral valve but, as of now, she should be fine. I am so lucky and grateful to have Kaylee in my life. Kaylee went through more in her first four months of life then I have gone through in my entire life. People tell me, all the time, that, how strong I am and how they don't know how I did it, but it was Kaylee that kept me going. October 26, 2010, Kaylee fought for her life and she has the battle scar displayed proudly on her chest. She is my hero and I know that my daughter and I can get through anything as long as we have each other!

Jamie- “Heart Mom” to Kaylee

Kaylee and her <3 Mommy, Jamie

Kaylee on her re-birthday.

Kellen Jackley
Born 12/21/2010 – HLHS
Philadelphia, PA

We found out, when I was 28 weeks pregnant, that our baby had Hypoplastic Left Heart Syndrome.  HLHS is a rare heart defect in which the left side of the heart is severely underdeveloped and cannot function outside the womb without surgical intervention after birth.  He will also need 2 future surgeries as part of this 3 stage repair. 

I will never forget that day…  Our whole world came crashing down and we were devastated.  The diagnosis was overwhelming and all I wanted to do at that point was find out as much as I could about HLHS & find some stories of hope from other families.  I knew for some reason this was meant to be and we were chosen to be Kellen's parents so that we could give him the extra special care he was going to need his whole life.  Fortunately, we live close to the Children's Hospital of Philadelphia, where the Norwood was pioneered, so there was no question that Kellen would be having his surgeries there.  They do 50% of the HLHS surgeries in the whole world.  I was even able to deliver him there since they are the only Children's Hospital with a Special Delivery Unit; thanks to William & Lynne Garbose.

Kellen was born at 9:25 am on Tuesday December 21st.  He cried right away and we were so relieved to hear that beautiful sound!  Of course they took him right away to assess him but not before we got to see him for a few minutes on his way out.  He looked perfect!  Aside from the heart defect, he was pretty healthy.  He had his stage 1 operation with Dr. Gaynor on the 23rd.  He pulled through with no complications and we were once again relieved and couldn't wait to go see him.  His recovery went very well.  He did develop a blood clot in his right atrium & also had a g-tube put in a few weeks after his surgery, due to feeding complications.  He was finally able to come home when he was 6 weeks old.  That was just last week so we are still adjusting to our new routine.  They expect his stage 2 operation to be when he is about 5 months old.  So until then, we just need to keep him healthy and hope for the best!  Everyday we have with him is a gift.  The shock still hasn't worn off of what he has & what he will need to go through, for the rest of his life, but we are just incredibly lucky to have him here with us.  Before the mid 80's, babies with HLHS did not survive birth.

We will be forever grateful to CHOP and their phenomenal Cardiac Team.  I can never repay them for giving our son a chance at life but I will dedicate the rest of mine to raising awareness for children with CHD & help fund research to improve the quality of life for these kids!

Stacie Jackley- “Heart Mom” to Kellen   

Kellen is 1 in 100

<3 Kellen <3

Jodi Ann Nejman- CHD Angel
1/15/1970- 7/22/1997
New York

This is a very condensed note. I could write a book on what we went through during the 27 years of my daughter’s life. My daughter, Jodi, was born in 1970 with TOF (Tetralogy of Fallot) and ASD (Atrial Septal Defect). We went through years and years of tests, catheterizations, and surgery. She had her major surgery when she was four. 

In 1970, when she was born, heart surgery was not totally perfected. There were still to many risks so we waited until Jodi could wait no more. Her lack of oxygen was causing "clubbing" in her fingers and toes and she was becoming out of breath and turning blue more frequently. So in 1974 they decided to move forward with open heart surgery at NYC's Columbia Presbyterian Hospital, by a Dr. James Malm who was one of the pioneers of heart surgery. The wait was horrid, the surgery long, and the fear of what could happen, paralyzing. Jodi made it through surgery and lived another 22 years only to die from complications from CHD. The scar on her heart caused her heart to "miss-fire" and she went into atrial fibrillation and died at 27. I was told by a heart surgeon, who read her autopsy report, that this was happening to a lot of children who had open heart surgery during that era. If this was the case, why was this not published??  Maybe she would still be here with us. 

There is not a day that goes by that I do not grieve for my daughter and think of the life she missed out on. I walk my path of grief with many other parents who have had children die from CHD. 

Marilyn- “Heart mom” to Jodi, CHD Angel

Jodi- CHD Angel (1970-1997)

Jodi, in the hospital with her "Pop"

Born 12/02/2003- Pentalogy of Cantrell 
Birmingham, Alabama
Angelina is our 7th child born on December 2, 2003 at 9:25am weighing 8lbs 2oz at 18 1/2 long. She was born with a very rare defect called Pentalogy of Cantrell. (5.5 out of a million births and the stats say only 10 percent survive.) Pentalogy stands for the 5 or more typical defects and Dr.Cantrell discovered or named this condition in 1955. Angelina was born with an ASD, VSD (holes in her ventricle and atrium)a dextroversed heart (which means the front of her heart is turned slightly towards the right), an Omphalocele (which includes her intestines only), a cleft sternum (her heart can be seen beating under her skin due to the bone not covering it) and an extra vena cavae.
We did not know of her birth defect even though we had 2 ultrasounds. This was such a shock for us! Angelina was so healthy when she was born which is rare for this condition. God blessed us so much. We give Him the glory for this precious angel everyday of our lives. When she was born, she was taken to Children's Hospital in Birmingham, AL. We were so blessed to have her Surgeon who knows all about this condition and he knew what to look for. It was so amazing now looking back and realizing God was with us every step of the way. During her first 2 days, she was checked for everything imaginable. She was given dye and a MRI to check her anatomy and make sure her diaphragm was complete. This is one of the normal defects with Pentalogy, but Angelina's was complete! We then found out within the first couple of days everything that was wrong. Angelina's major defect was her heart. We didn't find out until she was almost 7 months old when a heart cath was performed that she had 2 and half times the blood flow to her lungs causing her not to gain weight, not to mention how hard it was for her to breath when she would nurse. 

At 7 and half months old, she had her heart surgery. I proudly say God was with us once again. Angelina had one of the top 5 heart surgeons in the world to perform her surgery. His hands worked miracles, I am sure by being used by our Father in Heaven. Even with Angelina's heart turned, it didn't have to be moved and he closed her large VSD by going in through the tiny pin hole in her atrium (the ASD). She had her surgery on July 22, 2004 and came home 3 days later on 7 different meds. It truly was a miracle! In December 2005, she had her annual checkup. Her heart is completely healed and we were told she most likely will never need surgery for her heart again! She still has a leaky tricuspid valve, but we were told she can live with this without any problems.

On September 21, 2009, we traveled to Milwaukee, Wisconsin to The Children's Hospital of Wisconsin. It was there Angelina had another world known heart and Thorasic Surgeon who performed the repair of her cleft sternum by using 10 of her ribs. He filleted her ribs and these were "flipped"to make a sternum to protect her heart. She had her Omphalocele corrected as well. This surgery lasted for a little over 8 hours. She was hospitalized for 9 days, 5 of which she had an epidural for the pain from her ribs being filleted. We then had to stay in Milwaukee for another 2 and half weeks before she was released to travel back to our home in Birmingham, Alabama.
Angelina's story has saved 5 other babies from being aborted in her last 7 years of life. Because of carepages, and her story, I have been emailed by other women who are pregnant with either heart babies or Pentalogy babies. These women were told to abort, that their children would not survive. I can not stress enough for mothers to give their babies a chance at life. Yes, it is a roller coaster ride, yes there is the unknown, the fear of the "what ifs." But I have learned through Angelina that every facet of life really is "what if." We shouldn't have to see our child go through these physical challenges to realize this in life. However, I am so thankful that I have been given this gift of knowledge from having a heart child. She has taught me all about life's important things.
I want Angelina to realize what a true miracle she is. I pray for her to grow up so she can live the life she is meant to live. I know she has a special purpose here. It is my prayer she will find it one day!

- Anne Snider Steward
"Heart Mom" to Angelina

Angelina on her first day of school, 2009.