Hope For Little Hearts

It is that time of year again. I try to update my blog at least twice a year about Brody. For those of you who would like to follow closer we have a site set up that will notify you about his conditions every time I update. It is www.caringbridge.org/visit/brodysabin .

Well with the Hope for Little Hearts auction on its way up I thought I would do a little update. For those of you who don't know Brody has Left Ventricular Non Compaction (it is a rare form of Pediatric Cardiomyopathy.) Brody was put on spironolactone to release the fulness in his heart. Many of you who have spent any sort of time with Brody know he has had a unexplainable croupy cough since birth, well the doc saw that his heart is full (we already knew that though.) As far as I understood it fills with more blood then oxygen which creates a fullness in the heart, which in turn maybe causing him to cough to get more of a oxygen flow. His left ventricle also has late filling which is a sign of heart failure. He also has a atrial septal defect, which doctor has said would be silly to repair and put his heart under that stress because it won't "fix" him. Below is a little bit more about the disease and auction.

I just want you all to know why I put so much effort into HOPE for Little Hearts. You all deal with my endless facebook postings and emails promoting the auction. Here is why: We live each moment to the fullest. If there is one thing this situation has taught us (in the words of my good friend, I kind of stole her family motto) "Prepare for the worst and HOPE for the best" HOPE, one of my favorite words. Some of you ask why I put so much effort into HOPE for Little Hearts, that one word is the reason. HOPE for more funding for research, HOPE for a cure, HOPE for all the families around the world, HOPE for one more smile, HOPE for another hug, HOPE for another "I love you", HOPE for another day. That is what each of you give our family. Each letter, each ticket bought for the auction, each volunteer, brings HOPE. If there is one thing I have learned through this trial it has been to look for something positive. With the dismal facts of this disease that was difficult. This auction brings HOPE not only to my family but to the many around the world waiting for a cure. When we feel like our lives are upside down, we always have HOPE to hang onto. We are so grateful for all of you and the HOPE you give us to hang onto.

What does Left Ventricular Non Compaction mean?
It means his Left Ventricle does not compact. It sometimes sticks together instead of pulling back apart and compacting. Which puts him at high risk for cardiac arrest.

Is this Common?
Effects 1 in every 100,000 children (according to www.childrenscardiomyopathy.org)

Is there a cure?
Search for a cure continues. Unlike other congenital heart conditions, there is no surgical treatment or cure that can repair the damaged heart or the stop the progression of the disease.

Can't he just get a heart transplant?
Getting a heart transplant is much more then just simply getting a transplant. In order for a child to get a heart transplant, the doctors have to approve. Heart Transplant Facts- Each year 80% of diagnosed children listed for a heart transplant receive a heart in time. Of the more than 100 children per year that undergo a heart transplant, the average three year survival rate is 77%. Late survival remains to be determined but is expected to improve with further research.

Doesn't the government fund research?
Federal research spending is disproportionate to the severity of the disease. In relation to other serious diseases, research on pediatric cardiomyopathy continues to be extremely under-funded even though the years of potential life lost in a child with heart disease is 2-7 times that of an adult. While the mortality rate for pediatric cardiomyopathy is higher than childhood cancer, and each year the number of children in the U.S. diagnosed with cardiomyopathy is 3 times that of pediatric AIDS, Federal research spending on pediatric cardiomyopathy is only a fraction (less than 3%) of what these other well known diseases receive.

How can I help?
Go to www.hopeforlittlehearts.org and buy your tickets and come to our 4th annual dinner auction March 12th, 2011. Tickets are 2 for $35 and include catered dinner from Branks BBQ. All proceeds from this event benefit The Childrens Cardiomyopathy Foundation

Also we need 5 more volunteers for The One Big Kiss for Childrens Hospital. It is a telethon. We will be answering phones and taking pledges on March 2nd from 6am to 8:30am at Childrens Hospital. All Proceeds from the telethon benefit Seattle Childrens Hospital.

Contact melissa @ melissa@hopeforlittlehearts.org

Hope For Little Hearts

Hi we are the Sabins. We live in Orting, Washington. We have 4 Children Logan 7, Brody 5, Rafe 3, and Cammie-Jean 1. (Mom Melissa and Dad Jacob) Brody was diagnosed in July of 2007 with Left Ventricular Noncompaction (a form of Hypertrophic Cardiomyopathy)

*Just a warning these statistics may seem dreary, but there is hope in every situation, and please keep in mind that of course we hope for the miracle. Which is why we named our foundation Hope For Little Hearts.



I remember being pregnant with Brody. I remember how excited I was. I had a miscarriage before him, and was so excited to be pregnant again so soon. I had low amniotic fluid while I was pregnant with Brody. I remember not being afraid, I was monitored every week for it. (Little did I know that was just the beginning of the doc appointments.) Well fast forward to August 5th, I was eating my cereal and yep my water broke. 6 weeks early!!! So off to the hospital we went. They took me down for a ultrasound, and sure enough all the amniotic fluid was gone. So 1hr later I was having a c section. I remember the first moment I saw him!!! I only got to see him for a second and then he was whisked away to the NICU. He spent a week in the NICU which isn’t bad for being so early. His doctor was concerned with his growth from the beginning. They tested all sorts of things. We started with cystic Fibrosis, then a swallowing study, then off to endocrine, then endocrine sent us to GI and finally GI to genetics. I kept asking them to test his heart. But they kept telling me I was wrong. So I figured they were the doc. Then I ordered all of his medical records and started doing research myself. Upon reading through the records I saw things like “mother refuses to follow diet plan” mind you their diet plan to bulk him up was to sit him at his high chair with a cube of butter. Lets just say good thing I didn’t. The thing that caught my eye was that his chest medical records showed peri-bronchial cuffing in his chest which is a sign of heart failure. So I called a cardiologist that day. I decided to quit messing around. His appointment was 7/24/2007 and he was diagnosed with Dialated Cardiomyopathy. But I didn’t feel comfortable with it. Something still seemed off. So we went to Seattle Childrens and he was diagnosed with Left Ventricular Noncompaction (another form of pediatric cardiomyopathy, it actually falls under the Hypertrophic Cardiomyopathy.) So if there is one thing I have learned is it parents listen to your gut!!! You are with them 24 hours a day 7 days a week. It is called practicing medicine for a reason!!! Yes they have the education behind them, but nobody knows your child like you!!!

I was sooo relieved to finally have a diagnosis. So was Jake. Although it was relieving to finally have a diagnosis the more research we did, the more we realized this was not a run of the mill heart problem.

Here is a little info on Cardiomyopathy taken from www.childrenscardiomyopathy.org

Hypertrophic CardioMyopathy affects up to 500,000 people in the U.S. with children under 12 accounting for less than 10% of all cases. According to the Pediatric Cardiomyopathy Registry, HCM occurs at a rate of 5 per million children. The cause of HCM is largely unknown but most cases appear to be genetic in origin.

Unfortunately, there is no current cure or treatment that can return the heart to normal or guarantee long term survival. Although occasionally children with certain types of cardiomyopathy do improve, the vast majority do not show any recovery in heart function.
For the child with left ventricular non-compaction cardiomyopathy (LVCM) that has symptoms of heart failure, medical treatment with diuretics, ACE inhibitors, and possibly beta-blockers may be used to alleviate symptoms and potentially help the heart muscle structure to normalize. If the patient shows signs of significant arrhythmia, antiarrhythmic medications such as amiodarone or sotalol, have been used for prevention of sudden death. In patients felt to be at risk for clot formation, anticoagulants such as aspirin are used. Patients with associated metabolic disorders may be given a mitochondrial metabolic disorder cocktail of Q10, thiamine, ribloflavin, and carnitine. Once LVCM is diagnosed, a neurological evaluation should be considered because of the high risk of associated neuromuscular disorders.

Cardiomyopathy is the leading reason for heart transplantation in children. Roughly 20% of infants and children with symptomatic cardiomyopathy require a transplant within the first year of diagnosis. While a donor heart can cure all the symptoms of heart failure and greatly improve survival, it is considered a major operation with considerable risks. Once a transplant is done, there are other possible issues to deal with such as infection, organ rejection, coronary artery diseases and side effects to the heart medications that treat these risks.

For a physician, the most difficult decision is determining when a patient should be listed for a transplant. Since donor hearts for infants or young children are scarce, there may be a long wait for a donor heart that matches the required weight and blood type of the child. Cardiologists generally do not want to list too early when there is still a possibility that the heart function may improve or stabilize. It is also not advisable to wait until there is severe heart failure and the child's overall health deteriorates. The child may then be too weak to survive a transplant operation or a suitable donor heart may not become available in time.

Extremely sick patients may require placement on an artificial heart-lung machine called ECMO to sustain them until they are able to receive a suitable organ. However, ECMO is only a short-term bridge to transplant option with neurological consequences to consider. For older children over 50 kilograms, a circulatory support device called the "Heart Mate Left Ventricular Assist System" by Thoratec may be used to "buy time" for end stage heart failure patients while they wait for a donor heart. It has been successful in extending a patients life by 3 to 12 months while providing a better quality of life during the waiting process.

They put him on Carvedilol when we found out what he had. We watched his athletic abilities (which weren’t much to begin with) decline before our eyes. It turns out that for some cardiomyoapthy patients that Carvedilol can actually worsen the symptoms instead of help. Of course Brody fell under that realm. We found that out in October of 2009. Luckily we figured that out, and slowly weaned him off of the medication, and we thought he was doing better, but at his doctor appointment last week the doctor explained to us that his Left Ventricle is filling later then last time. He has gone from mild heart failure, to mild/moderate heart failure. So we are going to try a new medication as soon as we see any signs of exercise induced breathlessness. He is also at high risk for sudden cardiac failure, which can be hard for some to understand since he looks healthy. We often get asked the question of well can’t he just get a heart transplant? So many factors go into that decision. The doctor is the only one that can put him on the list, and then the average wait for a heart is 280 days. A heart transplant is last resort, and unfortunately the only true “cure” as of right now.

We are still searching for a genetic cause, as you read most cases are genetically linked. We have tested all of the major ones, and have not found a genetic reason for Brody’s disease thus far. Jake and I are still trying to get him diagnosed as far as developmental delays are concerned, we see them and know they are there.



A little about Brody: He is a happy boy, with a smile that will melt you. He loves horses. He loves to be outside. He loves to help. He wants to learn, and tries very hard. He now says he wants to be a doctor when he grows up. He loves his doctor so much!!

A big help to anyone who is diagnosed with pediatric cardiomyopathy is www.childrenscardiomyopathy.org . Join the forum there!!! It has been so helpful to be able to ask a question to other parents who are going through the same thing. We also started a foundation as a family that we could raise funds to help further pediatric heart research. It is www.hopeforlittlehearts.org . It has been a great source of comfort to be able to feel like we are doing something to help. Probably the most helpful thing for us though is our understanding of the afterlife and knowing that our family is sealed, and we will be together forever (I.e. my favorite hymn Families Can Be Together Forever) is a great source of comfort. (If you want to know more you can check out www.lds.org) Knowing that our Heavenly Fathers plan is perfect, and He knows what is in ours and Brodys future. He knows exactly what Brody needs and when he needs it, gives us a great source of comfort.