My high school sweetheart and I married in February 2002 at the young ages of 20 and 19. We decided a year and a half later it was time to start a family. It took 9 months of trying before we successfully conceived our first baby. She was born Friday, January 14, 2005. Gabriella Joelle Vega, a name so big for a 6lb 2oz teeny bundle of pink.
For four years, Gabriella grew to be so vibrant and sweet and even became a big sister to her brother Paul Jr in September 2007. A girly-girl to the extreme, independent, strong-willed and sensitive. She went through all the typical cooties kids go through, but was overall very healthy. I made sure she was always current on shots, ate healthy and made it to all her doctors appointments.
We went to her 4 year check-up, expecting for everything to be as it always is…. 90th percentile for height, 20th for weight, excellent speech and development, required shots and “see ya again next year”, but it wasn’t the case this time. Our pediatrician heard a heart murmur that he wanted to be double-checked by a cardiologist. He wrote us a referral and we got in for 8 weeks later. March 18 came and we went to the cardiology consult. The cardiologist listened to her, did a quick monitor of her heart to record the rhythm, and the cardiologist said he heard the same thing my pediatrician heard. He scheduled for us to go back and have an echocardiogram done on March 24, so that we did. There was something nostalgic as I watched all the different images on the screen. The little flicker on the screen we so anxiously waited to see nearly 5 years ago as she was growing in my belly was now this massive muscle, contracting and pumping and working- giving her life. The doctor sat down with me and went over the results of the scan, which were anything but what I had expected. She had significant enlargement in her left atrium, and he was failing to see a cause on the test. The best way for us to find out what was causing this was a cardiac catheter to be done. Another test.
The catheter was done April 24. Our family gathered in the waiting room as my daughter went under anesthesia to have a catheter done. The doctor came out to tell us that they had found the cause of her enlarged heart. She had a coronary artery, buried under her heart muscle, and as her heart pumped the blood supply was cut off. They call it Myocardial Bridging- and was rare in children. In partnership with that, she was diagnosed with another very rare congenital heart defect in small children, called Restrictive Cardiomyopathy. Her lower left chamber of her heart was stiff and not functioning, causing a backup of blood in her heart and making it enlarged.
May 11, 2009 our whole world changed. As my husband and I sat down to go over the findings of the catheter with the doctor, we expected to be faced with information on repairing her heart defect. Doctor Alhadheri said there was no repair for how severe her defect was and their suggestion for saving her life was “a new heart”. We hadn’t even considered this as an option, and it crushed our world in just those few words. Our child needed a heart transplant. Not only that, but we would have to move away from home to get it. We didn’t fully understand the magnitude of how this would change her life until we met with the transplant coordinator a few days later. She gave us the full rundown of the reality of it all. A lifetime of medications, constant risk of severe sickness to the smallest of viruses, probability of Lymphoma or skin cancer, chance that she won’t have children, and that we will face multiple transplants in her lifetime. A transplant is a replacement of one set of problems with another. BUT without a transplant, she will not see her 10th birthday. She is a walking time bomb, in constant risk of sudden heart failure.
Over the following months, we had her medical condition reviewed by multiple well-respected medical institutions to ensure transplant was in fact the only option. We were interviewed by the media to share her story. Fundraisers were thrown in her name to assist us with the insurmountable bills we will be faced with. I left my job to be able to keep up with her appointments and keep watch of her.
Through August, we completed every single (daunting) step required to list her for a new heart. We went to Loma Linda University for her intake visit and spoke about the process in detail over a 3 day appointment. We were encouraged to wait in Arizona for the heart and to arrange air transport to fly there when we got the call, so thats what we did. It took about a month, but on September 22, we met with and completed plans for air travel via a jet charter company. We had everything in line, including her Make-A-Wish trip to Disney World. She was to be active on the UNOS transplant list October 15, 2009.
Instead, on September 25, 2009, Gabriella suffered a massive stroke in her left MCA caused by the stagnant blood in her stiffened heart. She collapsed that Friday morning during breakfast and I immediately called 911. She was flown to Phoenix Childrens Hospital where she would spend 6 days in PICU and another 2 weeks in rehabilitation. I would later find out she was so unstable from the stroke that the day she was flown in and had an MRI to disgnose it, she almost coded in the MRI room. The stroke took her right arm function and her ability to speak. After being discharged, Gabriella was on twice a day injections to aggressively break apart the clot in her brain, as it made transplant an unsafe option.
She spend 4 months on twice a day shots, and 5 hours a week of therapies. She was finally cleared via MRI on February 5, 2010 for transplant, and was put on the UNOS heart transplant list February 11, 2010.
On April 14, 2010 we had a possible heart offer but got the call a few hours later it was not the one for Gabriella. We continued to wait and made another trip to Loma Linda for our monthly clinic appointments.
Gabriella's fateful day happened on May 17, 2010 which was day 97 on the organ transplant list. (Blogs on this heavenly event can be found in the May archive beginning May 17). They took her in to surgery around 730p pm and the actual surgery itself started at 918p. Her new heart started beating in her chest around 1120p... her second birthday. By 155a her chest was closed and at 230a, exactly 7 hours after I left her. Gabriella did amazing with the only complication being some irregular heart rhythms. She was extubated the next morning and the healing process began! After only 8 days in the hospital, she was released to our temporary and local home, the long term Ronald McDonald House for the next 4-6 months. It was miraculous... watching something this massive and miraculous happen right before our eyes. It's the kind of stuff you read about in the Bible, people given new life... but we were able to experience it firsthand! Seeing what gifts God gave the surgeons, and what faith the Surgeons had in God, was indescribable.
It is amazing how all of a sudden Gabriella does not have a list of conditions, limitations & side effects. It seems like everything is so simple now.... post-heart transplant, meds, steer clear of germs. Sure, to some that would be a lot to take on, but compared to the past and what we have endured, this is cake.
Amidst the excitement of transplant and Gabriella's new life, I was fortunate enough to build a strong relationship with Gabriella's donor's mother. It is very important for people to remember that in every miracle, in every exciting moment that we praise God, we need to go to Him as eagerly when there is tragedy. While I sat in complete awe of my energetic and ALIVE daughter, gazing my eyes on the BEAUTY that was God, I also sat leaning on His shoulder and letting Him cover me in His comfort as I learned about 3 year old Abbie who's life was cut short when a fun day playing on a swing set ended in her death. I spent countless hours praying for Abbie's family and PLEADING to God to make Himself known to them as they were too weak to see Him.
We have learned so many important things through this journey, and we have so much still ahead of us. First and foremost is to respect your kids and appreciate all they do. Just as we were not immune to such tragic news, no one is. Also, and probably the most obvious, is to register as an organ donor. You can’t take your organs with you, but they can give new life to someone in need. And finally, we have learned to rely on God for everything. Possessions mean nothing, your own plan for your future is uncertain, but God already knows the plan laid out for you. Being at peace with not fully understanding something or not knowing what the next step might be is truly the only way to really let God direct our life in the direction He wills.
Our family experienced amazing things in the time we spent post-transplant. God had worked on our hearts in the year before as far as earthly possessions and what we thought we needed vs. what we really needed, but he worked on something bigger in the months together after Gabriella had her transplant. Not only did she get a new heart, Paul and I had a change of heart. We experienced God's love on a deeper level than would not have been possible had we not been faced with such severe circumstances. He laid the groundwork when He asked us to strip our lives of the excess, to build a new foundation. We had no idea how amazing the structure was he would build. We don't want to sit and take advantage of this experience we were given... we want to share with EVERYONE what God can do.
We went into this thinking it was about Gabriella and her heart and getting her a new one. Never did we realize that over 18 months, it would change our entire lives and draw us closer to God. I feel closer to God, starving for time with Him now. I no longer hide behind my sins, and for the first time in my life I feel honestly and wholeheartedly free of them. I was given the burden and blessing of being FORCED to rely on Him with my child's life. My biggest hope is that through my fire for God and the journal (my blog) I have kept, others out there can find HOPE in God's ability to provide a miracle or peace, whether it be to give or take away.
God Bless you all and thank you for being part of Gabriella's journey!
Summary of Gabriella's old heart conditions:
Hypertrophic Cardiomyopathy (Found during pathology study)
Slight Bicuspid Aortic Valve
Leaky Mitral Valve
Aphasia (speech disorder)
Right Side Hemiparesis