Christopher Pena was born with a Left Ventricular Non-Compaction Cardiomyopathy

Kristi wanted to share her story with you all.

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 I was 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 cardiomyopa?thy (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.

We took him home at 45 days of age 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. 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.

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.

He is now 22 months old, his second birthday is rapidly approaching and I am basking in every minute with him. 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. God is still in the miracle business. 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 awareness.

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This article on Christopher is featured on The Congenital Heart Information Network and was updated on 14th January 2010. Kristi asked me to post it on here as well.

Christopher has dilated left ventricular non-compaction cardiomyopathy. It is a very rare and new form of PCM. Basically in layman’s terms, it means by “Dilated”, his heart is enlarged; “Left-ventricular non-compaction” is when a baby is in utero, the heart is like a sponge, many tiny holes, but by the time birth an unaffected child’s heart will solidify into a solid muscle. Christopher’s heart did not do that. “Cardiomyopathy” means weakness of the heart. His heart is blown up bit, and like a soccer ball, kind of quivering instead of the normal throb or pump of a heart. Nothing is missing or out of place, so surgery cannot correct this.

We were told that the only option was heart transplant and that was a trade off for another set of problems. The stats given to us for his survival on the long end would be ten years and that was if he lived through everything, and no rejections. In and out of the hospital the whole time, and on horrible anti-rejection meds. My husband I decided that quality of life versus quantity was more important to us. I just wanted to take my baby home and make him comfortable during his life here no matter how long or short. God has the last say so regardless.

We also feel like his life has been extended by the grace of God for giving our faith to Him. If and when God takes him, if we live right, we can go to him. I feel like we are really close to finding a cure for this with more research and awareness of the disease. He was given less than six months prognosis and was a hospice patient until the age of 15 months. He made an unexpected improvement in the function of his heart that doctors cannot explain. I attribute this to our faith and the fact that God is still in the miracle business.

Christopher has made the news several times mainly because he has such an intriguing story of hope. The least I can do to give back is try to support other affected parents and try to spread CHD awareness. I have been able to have a proclamation granted by our state governor and we (Mended Little Hearts, a newly founded support group here in Mississippi) hope to do many things this upcoming CHD Awareness Week 2010.

Update: 4th February 2010 – Kristi has informed CHD-UK that the cause of Christopher’s heart condition is due to Barth’s syndrome which is a very rare syndrome. Click here to read what Barth’s Syndrome is.

To read Kristi’s editorial on CHD Awareness in the Complex Child Magazine and to obtain the CHD-UK brochure on Pulse Oximetry click here

Written by Kristi Pena
February 2010

More on Christopher

http://www.youtube.com/watch?v=EXDev5RJvJQ

http://www.caringbridge.org/visit/cj08/mystory

http://www.youtube.com/watch?v=z_3zPRZoQuI

http://www.ibelieveinsickkids.com/video/Christophers-Story

Kristi Pena has given CHD-UK permission to use the photographs.