Frequently Asked Questions

Wednesday, March 21, 2012

How much money have you raised for Maxie's Forest?
In total - including the original support page, Auntie Beth's "running to remember" page, the 5 k fundraiser's pages, the entrance for the event, the silent auction and the raffle, we have raised $105, 879.27 for Maxie's forest!  Our goal was $100,000.  This is very exciting.  It means that over 20,000 trees will be planted in Maxie's memory.  That is about equivalent to the number of trees in Central Park.  There will be a pillar that stands tall in the Carmel Forest with his name on it that we can all go visit in Israel.

What happened to Auntie Beth being included in the Televised Marathon Coverage?
Auntie Beth never found the reporter who was doing the special interest stories.  It was early, it was dark and she never found her contact at the 11 mile mark where they were supposed to meet. Oh well.  There will be future opportunities.  Thank you to Ashley and Ann who worked to make it possible.  Maybe next year?

What now?
Good question.  We will continue to accept donations for Maxie's forest.  We can never plant enough trees.  They are good for the environment and help to neutralize our carbon footprint.  They are important for the Carmel reforestation efforts.  They are a sign of support for Maxie's family and make us feel loved.  They are beautiful.  We are working next on getting 501C3 status for a new foundation in Maxie's name.  Our hope is to be able to provide small grants to bereaved parents of young children.  The emotional cost of losing a child is debilitating.  The financial cost is enormous as well.  We hope that our grantees will be able to use the funds however they see fit - to pay for medical bills, funeral costs, headstones, therapy, or even groceries, food delivery or going to the movies.  Nothing REALLY helps when you have lost a child but to be able to alleviate even a small portion of the burden is what we hope we can do.  Our plan is to raise funds through participation in competitive events (like the marathons, triathlons and 5ks), a large event each year, perhaps several smaller events, and through grants.

Why are you worried about Baby M?
Maxie was perfectly healthy as far as the naked eye (or the pediatrician's eye) could see.  He did not die of suffocation (or they would have found suffocation as the cause of his death).  He died of Sudden Unexplained Infant Death Syndrome, which basically means "the doctors don't know".  If there is a chance that Maxie died because of something that he inherited, we would want to know that so that we could do our best to keep Baby M alive.

Why are you doing genetic testing?
The autopsy report showed that Maxie had a fatty liver.  This is something rarely seen in an infant.  It is usually found in morbidly obese adults.  If you knew Maxie, you would know that he wasn't even a particularly chubby baby.  All of the "experts" who hear that Maxie had a fatty liver immediately respond that it is the sign of a Fatty Acid Oxidation Disorder (a metabolic disorder).  If Maxie had a metabolic disorder, it was one that was SO rare, it wasn't found on his newborn screening exam.  Almost all (if not all) fatty acid oxidation disorders are inherited.  Hopefully, through the genetic tests, we can find the specific mutation that Ted, Maxie and I all have so we can test Baby M for the same mutation.  It is a longshot though and there is only a small chance that we will be able to find any answers.

What kind of tests are you doing? How much do they cost?  Will insurance pay?
We are doing a very new and sophisticated test called the exome sequencing project.  It costs $6500. We won't know if insurance covers it or not until we submit our bill to the insurance company.  Hopefully, they will cover even a portion of the costs.  If not, this is what credit cards are for.

Will the genetic tests give you any answers?
The geneticists have no idea if we will get any answers.  The test they are hoping to run for us is the most sophisticated that they can offer at this moment in time.  They have yet to perfect the analysis and they still don't have a complete understanding of all possible mutations.  They also don't have a complete understand of all metabolic disorders or fatty acid oxidation disorders.  The ones that they know the most about, and that are most common, are screened for at birth in a regular newborn screening panel.  Again, Maxie's condition (if he even had one) was not found with that screening.  It is also possible that Maxie didn't have a metabolic disorder and we might not find anything with the test at all.  LASTLY - we don't know if they can even use the sample of blood that the coroner has sent them.  It might not be enough blood and it might be too old (it didn't help at all that the coroner report didn't get to us for 6 months). 


Why can't you just test the baby when he is born?
We can't just test the baby when he is born because we don't know what we'd be looking for.  There are 20,000 genes with hundreds of thousands of possible mutations.  If we don't know what we are looking for, we can't test for it.

Why can't they just test you and Ted?
Same reason as above.  They might find many mutations that Ted and I have both have but if they don't know whether Maxie had it, they won't know what killed him.

So few babies die in infancy each year.  The chances of this happening again are statistically low.  Why are you worried?
If Maxie died because of a metabolic disorder that was inherited through our genes, the chances of this happening again are not statistically low for OUR children, even if they are for the general population.  For OUR children, the chances would be one in four.

Why did you guys get pregnant again if this was a possibility?
We honestly didn't know that this was a possibility.  We kept hearing from "experts" that SIDS almost never strikes the same family twice.  Metabolic disorders only account for 3% of SIDS cases - and by the way, as soon as they pinpoint the cause of death as a metabolic disorder, the case is no longer labeled as SIDS or SUIDS.  It wasn't even something we had considered.  I was already more than two months pregnant when the coroner's report came back to us.  Also, we probably would not have even pursued learning more about what was written in the report (because the report provides little to no guidance or next steps advice) except for that my mother-in-law passed the report onto a doctor who was a leading SIDS expert before retirement.  The vast majority of couples that lose children to SIDS go on to have very healthy children.


Can't you talk to an expert?
We are talking to experts.  It seems that if Maxie had something, it was something so rare, there are no experts. We are working with a geneticist that left a pediatric practice to go work as a pediatric metabolic specialist.  We will want Baby M to see him as soon as he is born.

If it is found that Baby M has a fatty acid metabolic disorder, what is the treatment?
Generally, a baby that is found to have a fatty acid metabolic disorder must be fed every 2-4 hours.  There are other treatments too, depending on the exact type of disorder.  Again, if Max had something, it is something so rare that "they" probably don't know what the treatment is.  It is possible that even if we find out what Maxie had, we still won't know what the treatment for that disorder is.  That is one of the worst case scenarios that causes so much fear and sorrow.  What we do know is that Max had eaten twice the morning that he stopped breathing.  He also managed to survive nightly fasts of 11 hours starting at 4 months old and he was thriving and meeting all of his developmental milestones.  He wasn't sick and he wasn't fussy. He didn't really fit the profile for a baby suffering from a metabolic disorder.

Is it possible that something else is responsible for Maxie's death?
Yes!  His fatty liver might have nothing to do with his death.  The thing about SIDS is that they don't know what it is.  The country's leading expert on SIDS believes that it is an abnormality in the brain stem.  Her belief is that this abnormality combined with an environmental trigger is what would begin an "episode" that would lead to the sudden death of an infant.  With this kind of death, it is very rare to see recurrence but still, they haven't clarified (because they don't know!) if genetics plays a part.

Unfortunately, we may never have answers.  What scares me is that well-baby doctors visits and having a happy and healthy baby won't be any indication that this won't happen again.  Either the baby will live or he won't.  He could die at 4 months, 10 months, 17 months, or not at all.  We are just not in the same pool as most every other happy and expecting couple....who should not have to worry about the very worst happening.  I know that when you tell us how excited you are for Baby M to come, you are sincere and want to see some happiness come back into our lives.  I just want to TRY and be clear about why this is SO very scary for us.  Words fail me.  I try so hard to articulate that this pregnancy is not all butterflies and daffodils but either I am doing a terrible job explaining that or people are just choosing not to hear me.  Even re-reading this FAQ page, I realize that I come off as unemotional.  I just don't know what to do anymore.  I am beside myself with worry and grief.  Losing another child is not an option for me if I want to keep living.

If you have more questions, email them to teddyabby at gmail dot com (the funny secret is that I actually have no idea why I can't just write my email address here but I can see that other bloggers write their email addresses cryptically, so I am just being a follower, not a leader) and I will put together another FAQ page for the future.  You can ask about anything....doesn't have to just be about the genetic tests.  We should know in the next few days if we can do the tests.  We will keep you in the loop.

1 comment:

Katespitser said...

Sending you love and hope while you walk across this tightrope. And 20,000 trees in Max's name is amazing. I know it doesn't bring him back but it does provide a sense of symbolic immortality....it is comforting to know there will be this beautiful place where the wind will whisper the name MAX.

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