I am not sure where to start, but I guess letting you know how I learned about CHD. It was when my youngest son was born and my husband and I were told , quote, “your son has a lousy heart.” Those words were followed by, “there is nothing we can do, take him home and enjoy him.” Okay, I am thinking, “it’s 2008, what do you MEAN, you can’t fix his heart!?” People in general perceive CHD’s to be something like a minor hole in the heart, something that can be grown into, or “fixed”. The reality is that these children, SOME of them have the option of surgery, but not without lots of risk.
Christopher is one of the ones that surgery isn’t an option for. His condition of dialated left ventricular non compacted cardiomyopathy means that that when a fetus is in utero, their heart is sponge-like (non-compacted). When they are ready to be born the heart will compact and become more solidified like a muscle. CJ’s heart did not do that - resulting in the cardiomyopathy (weakness of the heart). It affects his right and left ventricles where it is very hard for his heart to pump and function correctly. Nothing is missing, out of place, or backwards. It’s the whole heart, all big, stretched out, and stiff. The only option given to us was a heart transplant, and we went to Arkansas Children's Hospital for a heart transplant work up. Lots of things happened there for the decision to be made to opt out, but I can guarantee you this was the hardest decision my husband and I could ever make. But in the end, the saying "It's not the number of breaths in your life that matter, it's the number of moments in your life that take your breath away." prevailed. Also, we knew that the prognosis wasn't good either way, and whatever God's will was, would be with or without a new heart.
There were a lot of folks, including family, who questioned our decision. I remember the moment I truly placed my son at God's feet and asked Him to do whatever was His will, I felt the biggest weight lifted off of me. We were ready to take our son home and let him live his life out comfortably, no matter how short it may be. He and his older brother, Justin, were finally given the opportunity to know one another finally. The closeness and special bond between them made our decision worth it alone.
We took him home at 45 days of age with the EF around 19% and he was admitted into hospice the next day.
The doctors told us that his prognosis was six months or less. We had to learn to accept that each day may be his last. It is a very hard thing looking into your beautiful child’s huge eyes and knowing he is just on loan for a short while. God is the only reason I made it through that period of time, and I never let go of my faith that God would make my baby whole and it was a win -win situation for him no matter what. The footprints prayer, well that was me, God literally carried me through. And I could not let the fear of "what if" rob the joy of "what is"!
I remember people saying "they don’t know how I could sleep at night". Well, in the beginning it wasn’t easy and the pulse ox was a huge comfort as I could listen to it beep and know his heart was still beating. But somewhere along the way, I grew more confident, and eventually the pulse ox got dusty and I felt peace in knowing that Christopher was going to be okay.
Some people called it denial, some people called it an amazing act of faith - I tend to agree with the latter.
{Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus Philippians 4:6-7}
I trusted God and with that trust came the biggest peace that is very hard to describe. We celebrated Christopher’s birthday weekly and monthly, cake and all. Eventually, his expiration date came and went, he still remained a hospice patient, and we were still taking it one day at a time. His first birthday arrived and I cannot express to you the joy I felt that whole MONTH. The day we were promised NEVER to see was here!!! We had a huge celebration, and continued to give all honor and praise to the Lord. Christopher continued to get older and when he was 15 months old his hospice nurse decided it was time to take a look at his heart (we weren’t allowed any more ECHO's) with Christopher being a hospice patient and they “didn’t want to keep getting our hopes up”. The doctor told us that his heart had slightly improved but that he was still hospice status. Two days later we received a call from him that our visit left him feeling like it wasn’t finished and he took annother look at his ECHO. He also had all of his colleagues review it and Christopher’s heart had improved so much that in his good conscience, he could not recertify him for hospice! Okay after trying to put into words how I felt on his birthday, this is even more difficult to describe. Our language does not have a strong enough word. I can tell you that God does reward trust and faith and Christopher is a living breathing example.
We got another life shaking phone call when Christopher was 21 months old, this time from this geneticist. He told us the reason Christopher was born with his heart condition is because he has
Barth Syndrome(http://www.hopkinsmedicine.org/cmsl/Barth_Summary.html), a very rare genetic debilitating disorder affecting only boys, that causes heart failure, neutropenia, low muscle tone, fatigue, eating issues and pain along with other problems. It is not just his heart that is affected, but every single cell in his body.
There is a big possibility that we will face a decision of heart transplant again, as BTHS causes the heart function to be a rollercoaster. He is not supposed to be around other children because of the neutropenia, he has poor immunity. A fever can be fatal.
Christopher was the very first Barth syndrome child in our state, followed by his first cousin, Jacob. Barth syndrome affects less than 1 in every 400,000 males world wide and there are only approximately 150 known cases worldwide, though it is believed that BTHS is severly underdiagnosed. It is a very scary feeling to hear every doctor who examines your child say they have never heard of Barth syndrome and that I know more than they do about the disease. Barth syndrome did not get a name until the early 90’s and it had a 100% mortality rate for boys under the age of three as late as the 80’s.
With this diagnosis is affirmation to never lose sight of the trust we must have in our Father in heaven. We still depend on miracles every day. Back to the faith thing. God is in control, and He doesn't do half miracles and our trust in Him has never failed us.
The lemonade from the lemons of this discovery is that Barth syndrome Foundation (http://www.barthsyndrome.org/english/view.asp?x=1) has been a huge abundance of information and support for us. It is kind of like inheriting a whole new family of people who care about you. We experienced at the BSF 2010 International Scientific, Medical & Family Conference doesn't end with the affected families, even the scientists and doctors truly care. We met other families from all over the world, and some of the “boys” are now grown men, (our heroes!!) and it gives us a lot of hope. At this very gathering I realized this was the first time in Christopher's life that his story was actually ordinary! See, every one of these boys are a true miracle and each have an amazing story.
He is now 2 and a half years old! His last echo revealed that his heart function is up to 79% - with his own heart! He still has obstacles, but man when I look back at how far we have come, I am still awestruck by the power of God's healing.
His 3rd birthday is rapidly approaching and I am basking in every minute with him. Each milestone we reach, we remember how special it is, we were never supposed to see them. I still know better than to take for granted my time with him as we don’t know when god will call us home. It is a true miracle that my Christopher is alive today. Also, doctors have to tell you what they have learned in the text books, but that doesn’t mean God or the child in question is reading that same book.
I don’t know God’s plan, but I know that the least I can do is to continue to honor and praise Him, while also helping to spread CHD and Barth syndrome awareness. Christopher's story has made a number of headlines and he has become a regular little celebrity.I work closely with Mississippi Mended Little Hearts in hope of supporting others who find themselves in the situation we did. We also love to do anything for the Blair E batson hospital for children, after having so many doctors appointments, etc., that the staff have all become like family. The most important message for my family to convey is that God is still in the miracle buisness!
(If you have faith the size of a mustard seed, you will say to this mountain, "move from here to there," and it will move; and nothing will be impossible for you. Matthew 17:20)
I would like to invite you to follow Christopher's story and updates at his caringbridge website, http://www.caringbridge.org/visit/cj08 . If you would like to know the entire story, you can set the journal entries from oldest to newest.
I will "walk by faith, not by sight"
Matthew 6:34
"KEEP SMILING & PRAISE THE LORD ANYHOW"
http://www.caringbridge.org/visit/cj08
Kristiana
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