Braden Beck- Double Outlet Right Ventricle with Transposition of the Great Vessels, VSD, ASD & Prolapsed Mitral Valve

Braden Russell Beck was born October 4, 2002. He weighed a hefty 7 pounds 3 ounces and we were overjoyed. He was the first baby for myself and my husband Rusty. High School sweethearts and only 23 at the time, we were about to grow up very fast.

I had a normal pregnancy and delivery and our room was filled with family and friends shortly after his birth.  After the Ooh's and Ahh's were finished and our family went home, Rusty headed with Braden to the nursery for his bath and newborn shots. I had just gotten settled in my post partum room and my lunch had just arrived, when Rusty walked in the room with  look of panic on his face. He finally said, "They think there is something wrong with his heart."

It took about nine hours for the pediatric cardiologist consult to arrive. As soon as the echo was repeated and x-rays finished we had our entire family with as as the doctor explained the basics of Braden's defect.  He drew us a picture showing us where all the anomalies were and the entire time I remembered thinking to myself, that I had no clue what a normal heart looked like! At 12 hours old Braden was Life Flighted to nearby Phoenix Children' Hospital and admitted to the NICU.  As more defects were discovered we felt helpless. And ultimately his entire diagnosis was Double Outlet Right Ventricle with Transposition of the Great Vessels; a VSD, an ASD and a prolapsed Mitral Valve. After 8 days, numerous Echo's, EKG's and blood work we finally were able to get him to gain some weight and were allowed home.

Quickly our routine of feedings, giving meds, cleaning up everything that didn't stay down from the feedings, diapers and doctors appointments consumed our lives. He was stable and gaining ounces every week. When he was two months old a routine cardio visit ended in a diagnosis of Failure to Thrive and a trip to Phoenix Children's to place an NG tube. What should have been a 24 hour stay turned into nearly three weeks in the PICU as we discovered he was in heart failure. On Christmas Eve 2002, Braden had his first heart procedure- a cardiac cath. We knew the risk of enlarging his VSD was high , so they had the OR prepped for him in case they needed to do surgery right away. Luckily, he did well and spent his very first Christmas recovering in the PICU.

At the time Braden was born there was only one Pediatric CardioVascular Surgeon in Arizona, and he had just been in a serious car accident. The 'replacement' PCV surgeon felt a single ventircle repair was a good option. As a family, we felt that he could have a full repair done and sent his records to several surgeons across the U.S. Eventually, we decided to take Braden to Dr. Frank Hanley at Lucille Packard Children's Hospital at Stanford. Then, for the next two months we focused on getting him to gain weight. He was on 28 calorie formula round the clock.

The day he turned 4 months old we boarded a plane for Palo Alto, California with my husbands parents and high expectations. On February 7, 2003 Braden had his first open heart surgery. I think I aged about 20 years in the ten hours we waited while he was in the O.R. Nearly 15 hours after we hugged our baby goodbye in the hall, we were taken back to see him briefly.

I was not prepared to see him post op.  The emotions of feeling so grateful they made it through, and yet so sorry for the pain they are in --all at the same time, it was overwhelming.  I am sure every Heart Mom knows just what I mean.

 It took a week to wean him off the ventilator and I got to hold him for the first time on Valentine' Day. He faced heart block, pace maker issues, became addicted to the pain meds, and had to go through withdrawal all in the two and a half weeks of his stay in the CVICU. But there were high points as well. He laughed his first ever laugh on his Daddy's birthday and learned to put his paci back in. A few days before we were discharged our surgeon told us he had thought Braden had about a 15% chance of making it out of the surgery. And I think that was the first time we really realized just how severe and rare of a defect he had. His progress amazed everyone.  His case was even studied at an international convention for PCV Surgeons. We went back to the hotel in California, pulled his NG tube for the final time, and booked a ticket home.

He excelled, gaining weight, weaning off his Lasix and was doing great...for about two months. Then, he went into heart failure, again. The sutures in his repaired Mitral Valve hadn't held and he would require another surgery. In August of 2003, at ten months old, we again packed our family up and headed back to LPCH.

Dr Hanley met with our family in pre-op and discussed his hope to be able to repair his valve and not replace it. Thankfully, this surgery would only be 5 hours long and went perfectly. They were able to use his own pericardium to do the repair.  I know they say kids rebound quickly, but on only his second day post op, we found him sitting, playing and smiling in his bed.

We were discharged four short days after his surgery. To everyone's surprise he came home on only Tylenol. He required no heart medicines of any kind. He hit a huge growth spurt and became a 'regular' toddler.

Currently, Braden is almost 8 years old. He only sees the cardiologist, Dr. Nowlen, once a year for an Echo and exam.  He is amazing. He has no limitations. He plays soccer and baseball and competes on our city Dive Team in the summers. We have expanded our family and Braden has two younger heart healthy brothers, Berkley (10/06) and Brenner (8/09). We are thankful everyday for the wonderful blessing he is in our lives.

I think the most amazing part of his journey has been my ability to talk with other families going through this process. In several cases good friends have been diagnosed in utero and I was able to hold their hand as they cried and later help them pack for hospital stays. Just this month my new little niece was born and she too has a heart defect and it has been so comforting to my brother and sister in law to have us guide them through this difficult journey. I welcome any Heart Mom's who need to vent, cry or have questions to contact me or another Heart Mom- because it helps so much to know you are not out there doing it alone.

Owen Simmons - Hypoplastic Left Heart (HLHS), Pre-Transplant

Owen was born on January 28, 2008 with a severe heart defect, Hypoplastic Left Heart Syndrome. The left side of his heart was underdeveloped and without corrective surgery shortly after his birth... he would die. The corrective surgery is performed in three stages... the Norwood (birth) , the Glenn (3-9mo) and the Fontan (2-4yrs). On Owen's one week birthday, he underwent his first open heart surgery, the Norwood. There are no words to describe the heartache of sending our newborn son to the operating room, not knowing if we'd ever hold him again. We paced the waiting room at Phoenix Children's Hospital for 7 LONG hours waiting to hear that he was okay.

Owen recovered quickly from his first surgery. He was considered "FRAGILE", but after spending his first 30 days in ICU, he came home with seven medications and an NG tube for feeding.
We took him in for a heart catherization the last week of March 2008 to find that he was in heart failure. His heart function was decreasing, his tricuspid valve was moderatly leaking and his heart was working overtime. Owen was admitted to ICU and placed on Milrinone to strengthen his heart and prepare him for his second open heart surgery, the Glenn. One week later, we felt he was ready and he went back for surgery two. We were scared breathless when the doctors didn't know if he'd make it out of this surgery. He was weak, his oxygen saturations were low and he had a hard time coming out of the OR. His sternum and skin were left open again, this time in case they had to get in an emergency. Thankfully, he had a major turnaround during those first 24 hours and was on his way to recovery.
Owen spent another 30 days in ICU until he was ready to come home.Owen remained in a "fragile" state after his Glenn. His tricuspid valve regurgitation is still moderatly leaky and he has some narrowing in his arteries due to built up scar tissue. On June 4th, he was back in ICU for another cardiac catherization to balloon open his narrowings and coil off excess collaterals. This helped for a while, but he was back in ICU on October 15th for more coiling of collaterals and balloning of his arteries. During this 6 hour procedure, they determined his heart continues to fail. His function is decreasing, his tricuspid valve is leaking more and his pressures are high. His surgeon sat us down and explained there is nothing more they can do for Owen's heart.Owen will need a heart transplant! Nothing could have prepared us for our next journey ahead. Arizona doesn't have a pediatric heart transplant facility, so we would need to research and relocate.
We visited UCLA in December and Owen had his first transplant evaluation. We sat back and waited for all the test results to come back. It was a LONG four weeks of waiting.
The news wasn't good. Owen has extremely sensitized antibodies built up against many common antigens. This will make it very difficult to find him a heart, and he is considered high risk for rejection. In January 2009, we started pre-treating Owen's antibodies with IVIG (immunoglobulin) and Rituximab (chemotherapy). He was hospitalized on four separate occasions to receive his treatments. After four weeks of treatment... we drew his labs once again, and waited.
Once again, we waited four long weeks to get the details of his antibody results. All of the treatments failed. Owen's antibodies didn't budge. Since Owen is now considered high risk and did not respond to his first treatment, we've decided to look at other transplant centers that have experience and knowledge in working with antibodies in transplant patients.I called every pediatric transplant center in the nation and spoke with their transplant teams. Of all the wonderful hospitals to choose from, we chose Lucile Packard Children's at Stanford as Owen's transplant hospital.
Owen is currently being treated for heart failure. He is fed 100% by tube, he is on 7 medications, 1/2 liter of oxygen and he tires easily. Owen has PT, OT, Speech and Feeding Therapy weekly and is catching up in all areas of development. We visit our local cardiologist every four weeks and travel to Stanford every six months. Owen is monitored very closely and when the transplant team at Stanford feels it is time, we will get him listed for his new, perfect heart!We PRAY everyday that Owen will be taken care of. That his smile will continue to brighten our lives. We want to watch him grow up, go to school, find his talents and passions in life. His spirit can light up a room, his laughter is contagious and his smile brings HOPE to everyone he passes. He is OUR miracle and a JOY in our lives.

Welcome to Family Heart Book! 

About the Family Heart Book...

Family Heart Book was designed to give support to all the families that have had a child born with a Congenital Heart Defect.  Having a child go through major heart surgery among other complications really takes a toll on your family and it's so important to have support as well as an idea of what's to come, etc.  As many of you know the best support are the ones who've been there and who know exactly what you are going through, and the Heart Families are the best--there's no doubt about it!!  Hopefully this book will give you that!

This site was developed to share our Heart Babies with each other and we are hoping that you would like to be a part of it!  Our goal is to get as many families involved and produce a book that will not only be a keepsake for you, but to also give strength & hope to the new families enduring this amazing yet very stressful time in their lives.  This book will feature your childs journey through your eyes.  It will include pictures of each child & their families as well as honor those doctors, nurses & hospitals that we spent most, if not all of our time when they were born, in one of my favorite sections, Heart Heroes.  For the new families that are to come, we will be producing a new book each year so that we can be sure to have every one included! 

If you are interested in being a part of our book, please contact Ashley Majorek at familyheartbook@yahoo.com  to get all the details. I look forward to hearing from you!!