Hypoplastic Left Heart Syndrome

Throughout these blogs you will see me refer to Scarlets congenital heart defect as HLHS. This stands for Hypoplastic Left Heart Syndrome, a child with this defect only has the right side of their heart. When Scarlet was born we were under the impression shed go through the standard three surgeries...At just 3 days old she underwent a procedure that showed her coronary arteries were not what they should be and IF the surgeries were successful she could have a heart attack at any point in time... which left us with Heart Transplant. At a week old she had a pulmonary Artery Banding to help preserve her life during the wait.. She also had a balloon septostomy at 2 1/2 months to help.. we almost lost her 4 times, and after waiting 3 1/2 months she got her second chance at life. September 26,2011 an angel entered our daughter and saved her life. Our daughters life will be treasured no matter the length of time she may grant us, though we hope for a entire lifetime. "Enjoy life today, yesterday is gone, and tomorrow may never come." If you'd like to know more about Scarlets condition please feel free to read more of the upcoming blogs.

Thursday, September 29, 2011

Life has just begun...our Miracle girl.

As you all know just a week ago Scarlet was in a tight spot, not sure if she was even elligible for a heart transplant. She was on the verge of literal organ failure and eventually death, we were asked to write a plan of how wed want her passing to go and although we tried to stay realistic of the possibility we just couldnt give up. Without writing the plan we continued our daily and nightly visits, praying earnestly and placing all faith in the Lord that he could heal our angel. The week she was very sick we decided to have one of her primaries take her footprints so we could have them and I eventually wanted to get them tattooed. During the process of getting her footprints her nurse Lorene shared from past experience how very sick babies would get footprints at the scariest point in time of their little lives and would then miraculously get better. Thinking it was a touching story it gave us more hope that just maybe this could happen. A week later on September 25th, a sunday we had walked in to our friends tattoo shop to get these footprints for ever imprinted in my skin. About half way through the session (6:30 pm)Vince gets a call from the hospital. Unaware of what was going on I started getting very nervous, worried that something had happened to our angel. After a short phone call vin came in saying Dr. Razzouk wanted us to come in to sign paper work as soon as possible and hung up. I began running questions through my head of what paperwork this may be, maybe scarlet was slipping fast and they needed to have our consent to let her go.. Not even 10 minutes later his phone rings again. Going outside he began to talk, still getting tattooed I grew more and more worrysome until he looked through the window and gave a thumbs up and touched his heart. Still confused I waited till he came inside, "They have a heart for scarlet," Vin spoke these words and it was as if he was speaking another language, asking him to repeat he said.. "They found a donor heart babe, scarlet has a heart." Being completely caught off gaurd and overwhelmed with joy I didnt know what to do, they needed our consent over phone so they could prep her for surgery before we came into the hospital to sign actual papers. We consented, said a prayer with the doctor and told our buddy to wrap up the ink so we could go. Leaving the shop with half done tattoo we called the family letting them know of the amazing gift that the Lord had just given us. Not even 3 hours later my parents were there waiting in the NICU with us for Scarlet to go into surgery, and Vins mother, who had just arrived in NY for a business meeting was catching the first redeye across the entire country before even unpacking her things to be with us..She was to go into surgery between 10pm-12 am and she was all ready to go. With many congratulations and happy faces we waited patiently for her to be wheeled to the OR. Awake the whole time miss scarlet greeted each person and occasionally gave a smile as if she knew what gift was to be given to her...10 pm rolled around, then 11, 12 and 1. Getting anxious we asked if they heard anything, then a call came... Nothing would happen till morning. Not sure why, or what was happening we were sent home for the night to rest. I literally stayed up questioning why and what was happening, did she not get the heart, did they get our hopes up for nothing.. with a prayer for comfort I layed my head down to rest for the night. Early the next morning of the 26th I called the Hospital, Scarlet was to be the "second case" for the day, meaning another person was going to OR before her. A little frustrated I rested a little longer, thinking I had time to do so. After awaking the second time we got dressed and headed to the hospital around 10:30 am. Walking up to the desk one of our primaries Sandy was sitting talking on the phone when she saw us, she expressed with some emotion "you guys im so sorry she already went down into surgey, I tried calling you, but they already took her." Being that we had waited with her for 7 hours the night before we were ok with this, and we went down stairs to get a pager so we could be updated. 12:30 pm Scarlets surgery began. From there we waited and waited, heart families and friends came to visit us and wait with us during the procedure and after 6 long hours later we got the text "scarlets new heart is in and working well." Relieved we waited for the next text at (6:45pm) that said "baby is in 5800 unit."
             We waited about 20 minutes before Dr. Razzouk came in and told us the remarkable news... "Surgery went well, her heart was a perfect fit, not too big, not too small, and it took off as soon as we started it." Words cannot express how surreal and incredible this was to hear.. Our daughter is a living angel. Someones selfless actions gave our miracle a second chance. No amount of gratitude can ever be expressed to the donor parents. If were given the chance we will live our lives showing them how much we truly appreciate and love their miracle. We want them to be part of our scarlets life, just as theyve given us theirs. The first time we saw Scarlet post transplant was absolutely amazing. PINK!!! Thats the first thing you saw. What a difference from the picture of the 5 of us above to the pink gorgeous little girl you see with a brand new, 4 chamber, beautifully pumping heart. The first 24-48 hours were told would be the most critical, and to me the most stressful, but shes pulled through, shes getting extubated hopefully tomorrow, then chest tubes and then little by little meds will be cut down to only the ones she will remain on when we go home, and we can hold her and pick her up whenever we like.. Here I sit writing our miracle story at nearly 55 hours post transplant, preparing for the day that is soon to arrive that we bring our angel home for the FIRST time in her almost 4 months of life!!! Anywhere from 8-15 days before we can bring her home and boy has the stress of the cleanliness of our temporary home came to my attention. Scarlets new heart is not the end of our story, her life will consist of many many many medications to suppress her immune system so she doesnt reject her heart. With a suppressed immune system she has more chance of getting sick which means my new title is "mom, the germ freak!!" For the first probably 6 months we will try and keep scarlets visitors to just family, and only if theyve had their flu shots and are not sick, well scrub up when we come in the house, sanatize and then if potentially even sniffley sick we will put masks on... We will have clinic visits twice a week for the first 6 months and must stay in the loma linda area for at least 4 months before returning home to vegas. Scarlets journey is not yet finished, her little fight at life has just begun.. With all this said... I couldnt be more thrilled for my new title, the new responsibility and more so... to bring my child home. She is our world and yes it will take time to get in the routine of giving meds several times a day, 10 to 12 different medications but to see her grow and see her gorgeous eyes everyday, to be able to hold her with no wires is the greatest gift we ever could have been given. I wish I could hold the people close and thank them from the bottom of my heart for giving us this chance. We thank God everyday for giving us this miracle and this chance. Scarlet is here for a purpose... and we believe that her life should be utilized to help others in this situation, not only the babies waiting for transplants but donor families as well. Letting them know their not alone. We are starting by getting involved with our friend Matt and Sarah Hammitts foundation called Whole Hearts Foundation. Please make sure you go to facebook or even the WholeHeartsFoundation website and learn more, show more in supporting CHDs and Organ Donation. Scarlets life has just begun and we hope you will all continue to follow her in her journey through life. Thank you for all your love and support, for all your endless prayers, God is Good and he has gotten us here to this point. He saved our daughter and we will forever dedicate her to him. <3 No matter how long her life is she will know her creator and learn to love him with her whole heart. We love you all and hope that whatever your going through at this point in time in your life you realize that God will reach down and pick you up. He never gives you more then you can handle and tomorrow is always a new day. Take things a day at a time. We did and we still do. Scarlet has given us a reason to believe she is more then we could have ever asked for and to think... they wanted us to terminate.. Man.. were they wrong. Shes influenced more people then those people could ever dream of impacting. Im proud to say, I am Scarlet Marie Griffiths mother, a germ freak and blessed one at that.

                         With all our love,
              The sock monkey Family..
                   Alexis, Vince and Scarlet
                          3 whole hearts <3


  1. Beautifully written! Scarlet is truly a gift from God. My family and I have been following her story. And it brings me joy to know that God definitely has a purpose for her here! She will do amazing things! God knew what he was doing when he chose you to be her parents. Your strength and faith are inspiring! You yourselves are a great testimony. God bless you and your sweet Scarlet. From one heart mom to another, heart hugs! ~Julie Elder

  2. Oh, mama. I am SO happy for your little family! It was so wonderful to read the updates that Whole Hearts posted on Facebook a few days ago after you got the news.

    I have been following your journey for the past few months as our little Lincoln was born in June, also with HLHS. Sadly, he passed while waiting for his special heart and it has brought me great joy to read about Scarlet. I will continue to pray for your family, the donor family, and the staff taking care of your daughter. Your faith in G-d through this experience is a living testament :)

  3. Thank you for sharing your beautiful story of Little Miss Scarlet. My family has been following your family's story as we also await a heart transplant for Kayla, who is 19 and suffers from a very rare heart disease known as Uhl's anomaly. She did not know she was born with this until age 9. We have been praying, supporting and thinking of Scarlet, her family and now the donor family. I am Kayla's grandma and in 1990 my husband also recieved the gift of life after his healthy heart was struck by a virus. He lived for a month and one day after transplant and helped to prepare the way for transplants today. Please follow Kayla on Letters to Kayla on Facebook. We will continue to follow little Scarlet and her family. We wish all of the children perfect hearts from our hearts to yours. God Bless you little Scarlet and her family too. Thank you for your inspiring story. You give us hope. From Kayla's Mimi

  4. Oh what a beautiful family. Thank you for sharing your lives with us!

  5. I have been following and praying for your family for the last month or so. I am Soooo happy for little Scarlet. She carries 2 life's in that beautiful heart, hers and another sweet child who she gets to live for. I am the aunt of a sweet little boy who last year at 20months old went to be with Jesus. His heart valves and corneas were able to change the lives of four different children. While nothing can take away the pain of not having our monkey here on earth with us, the bittersweet joy that he has helped four families, and touched countless others has touched us greatly. I pray that Scarlet continues to heal, and that the donor family is able to find comfort in their gift. It's a gift that no family wants to be in a position to give, but is the greatest gift of all.

  6. I do not know you but I've been on the other side....my sister at the age of 32 became a liver and kidney donor. I'm still sad at her passing but the idea that two people are still alive makes it so much better. I'm happy that you got such a great gift! I promised my sister I'd spend every breath I had talking about organ donation so that more families like yours have such great outcomes :)

  7. We just donated to you through wish upon a hero... I wish we could do more! We've been where you are, with a newly transplanted child (liver at 18 months) - the photos are so hard to look at, it feels so recent in my heart. It's hard - I know it is. The meds seem endless, and there are very hard scary days, but in the end, you look in their eyes and all you can do is be grateful that they lived. I wish you all the very best.