Genetics and Petitions

I think we'd all like to think of ourselves as pure, clean, flawless beings - capable of passing on only our best qualities and attributes to our beautiful, perfectly cloned cherub like babies.  When Jonah entered the world he was so perfectly formed - from his sculpted earlobes to his dainty lips to his wispy eyelashes and brows....only his size was flawed and even that seemed ok.  He was proportionally perfect - miniature, but magnificent.

After Jonah's death, we were presented with several theories on what caused his early birth and sudden decline.  The most sound theory centered on a placental infection in utero, which caused sudden preterm labor and exposure to a deadly infection.  While no parent wants to be the "cause" of their child's death, I embraced the idea of Jonah contracting an infection.  As the high risk OB GYN said, "This is a case of bad things happening to good people."  Bacteria lives in everyone's body - it's not supposed to be able to get to the placenta.  The chance of a placental infection during pregnancy is extremely rare and the chance of this happening again to us would be like being struck by lightening twice.  While it broke my heart that the infection came from my body, it also gave me comfort to know that this would most likely never ever happen again.  It was a freak occurrence.  Jonah was perfect in every way.  His tiny body just couldn't fight this freak infection.  As a precaution, we agreed to do genetic testing on Jonah's blood and skin cells to rule out any genetic disease, although what really was the point of that?  We had our answer.

Months went by and the infection theory settled into the fabric of our lives.  Our conversations went like this: "We had a baby in May.  He lived for two days and passed away.  We found out I had an infection in my placenta that he was exposed to and that's what caused the preterm labor and his death.  Yes, that's a very freak thing to have happen.  Yes, the doctor says we can try again in about six months because the chances of this happening again are slim to none."  As hard as it for that to be our spiel, it was ok because there was hope in it.

That "hope" came crashing down in mid August when I got a call from Dr. TC Narumanchi, the pediatric geneticist from WVU Hospitals.  Why was he calling me?  We had met with him about a month after Jonah died and he had ruled out any genetic component to Jonah's death.  Oh ya...he said the results from the fatty acid skin test would take a few months because it had to be sent to Mayo Clinic so Jonah's skin cells could be grown in a petri dish for further genetic testing.  I was sure he was just calling to confirm that the Mayo Clinic found nothing genetic and we could move forward with our lives.  Little did I know, the comfort level that my heart had reached after months of aching and breaking was about to end.  Dr. TC called to report that Mayo Clinic's tests found out that Jonah had something called SCAD, a very rare genetic disease that in very rare cases is lethal.  For about 20 minutes TC went on and on about SCAD and what it was and that because it was a genetic disease we would have a 1 in 4 chance of this happening again and that we should think about doing IVF and doing genetic testing on the embryo or using a sperm donor or an egg donor.....  I tried to stay calm on the phone but I was quickly having a nervous breakdown.  At the end of his confusing monologue filled with tons of technical genetic jargon, he said the following, "BUT I don't actually know for sure if Jonah had SCAD because his numbers were diminished, but not absent."  So, there was a chance that Jonah really didn't have SCAD??  Dr. TC said he would have to talk to the SCAD "expert" at Mayo Clinic to confirm the diagnosis, who ever so tragically was on vacation.  Dr. TC would call us as soon as he knew for sure.

So, for the next three weeks we were in a state of utter panic.  Suddenly, our comfort in knowing Jonah's birth and death was just a freak thing turned into a genetic monster with a 25% chance of recurring.  We were reliving our grief all over again. 

The week Dr. TC called I was listening to the book Eat Pray Love by Elizabeth Gilbert for the third time on audiobook.  (Side note: if you haven't read this book, drop everything and find a copy.  It will change your life.)  There is a scene in the book where the main character, Liz, is going through a horrific divorce that will not come to an end.  While driving to a book signing with her friend Iva, she cries on her friend's shoulder that her husband will not sign the divorce papers and after months and months of fighting through lawyers she just wishes it would all come to an end.  She says,  " I wish I could get some divine intervention here. I wish I could write a petition to God asking for this thing to end."  

Her friend Iva says, “Where did you get the idea you aren’t allowed to petition the universe with prayer? You are part of this universe, Liz. You’re a constituent – you have every entitlement to participate in the actions of the universe, and to let your feelings be known. So put your opinion out there. Make your case. Believe me – it will at least be taken into consideration.”  So Liz pulls out a pencil and writes:

Dear God.  Please intervene and help end this divorce. My husband and I have failed at our marriage and now we are failing at our divorce. This poisonous process is bringing suffering to us and to everyone who cares about us.

I recognize that you are busy with wars and tragedies and much larger conflicts than the ongoing dispute of one dysfunctional couple. But it is my understanding that the health of the planet is affected by the health of every individual on it. As long as even two souls are locked in conflict, the whole of the world is contaminated by it. Similarly, if even one or two souls can be free from discord, this will increase the general health of the whole world, the way a few healthy cells in a body can increase the general health of the body..."

The petition is followed by Liz and Iva naming all the people - both dead and alive who "just signed" the petition.  The list includes their close family and loved ones in addition to the likes of Bill and Hillary Clinton, Abraham Lincoln, Gandhi, Mother Teresa, Bono, Saint Francis of Assisi, Eleanor Roosevelt, and so on and so on.  Minutes after she wrote her petition and everyone "signed" it, Liz's cell phone rang. It was her lawyer - Her husband had just signed the divorce papers....Finally.  

After listening to this scene while driving home from work in my car, I suddenly had such a strong connection to it.  I knew in that moment we had to write our own petition to God.  We had to petition that Jonah didn't have SCADS - that this was a mix up.  That night when we went to bed, I told my husband, Deva, about the scene in Eat Pray Love.  He agreed.  We needed a petition of our own.  So we made an audible petition to God.  It went something like this:

Dear God, 

We are Heidi and Deva Solomon and our baby Jonah died in May.  We just got news that he died because he may have had rare genetic disease called SCAD.  On this date, we petition that Jonah did not have SCAD.  We petition that he was a perfect little baby boy, free of any genetic defect, who died because he was exposed to an infection in utero.  His tiny body could not fight the infection and that is why he died - not because of SCAD.  We petition that the "expert" in SCAD Disease is going to call Dr. TC and inform him that our precious Jonah did not, in fact, have SCAD and that this was a false report.  God, we need you to honor this petition because if Jonah had SCAD it means that we have a very good chance of having another baby die and we cannot endure a second tragedy.  Please God hear our petition and honor it.  This means so much to us.  Thank you so very, very much.  

Then we proceeded to name everyone who signed it - our family, our friends, our coworkers, our favorite actors, singers, and politicians.  They all signed it. 

Before "writing" our petition, I was a mess.  I was so sad and anxious and upset.  I was crushed.  But writing that petition lifted me - made me feel lighter.  I felt so strongly that our petition, our prayer would be answered. 

Three and a half weeks after our initial diagnosis of SCAD, and about a hundred messages left with the pediatrics genetics department to "please please please call us back, we're dying here," Dr. TC FINALLY called me.  He apologized for the delay and said, "I talked to Dr. Mattern at Mayo Clinic.  He reviewed Jonah's case and it took him thirty seconds to conclude that Jonah did not have SCAD." DID NOT!! DID NOT!!! After three and a half weeks of sheer agony we finally got our answer - the answer we so desperately needed! Our petition to God had worked!! Wow.....  I am in awe. 

I heard that part of Eat Pray Love exactly when I needed to and it led me to write a petition of our own.  And that petition was heard.  The universe is a mysterious thing....I'm not a particularly spiritual person.  I'm skeptical.  You never know if things are out of coincidence or an answer to a prayer.  In any case, I am so grateful to the universe, to God for receiving our desperate plea. 

Thank you Elizabeth Gilbert for the inspiration.