It has been 97 days since I learned the word
“Glycosylation.” Still today, I say the word out loud, let it roll off my
tongue and out into the air, just to be able to say it, just to be able to know
it.
We have begun to heal in all the ways people heal. We have
plans to bury our second son’s urn, to buy his headstone and hold a small,
private service. We go to the cemetery for their birthdays and death days. I
cry a lot less.
Perhaps the most significant and terrifying change in our
lives has been our big, big secret for the last 16 weeks.
I am pregnant.
Now settle down! I know about one half of people who think
we are NUTS to do this again, and they are right. The other half of everyone
thinks we are brave and lucky, and they are right, too.
Because of all the things we have learned from our trip
through the genetic experience, we have learned hope and we have learned fear.
Now one emotion never comes without the other, no matter what the genetic tests
say. But I must say, with all my heart and all my being, thank GOD for the
genetic tests. Thank God for the definitive answers, for the black and the
white with no gray in the middle. Thank God for the yes after so much no.
Our third son is heterozygous – a carrier of his father’s
mutation on chromosome 22, gene ALG12.
And he is healthy.
After three ultrasounds to confirm heartbeat and growth, my
husband and I high-fived during a normal NT scan with a normal NT reading.
Still taking nothing for granted, I underwent a CVS with no complications. Two
weeks later we got the news – the baby is genetically healthy.
Last week we went in for an early ultrasound and saw our
happy baby boy wiggling and waving. So far all his major organs look good –
heart, lungs, brain especially. We go in for the average anatomy scan in four
weeks.
I am happy – so happy and so blessed. But I never, ever want
to downplay the chance we took in the conception of this baby. We played
genetic roulette and we know it. Single gene recessive was our best case
scenario and it is still terrifying. A 75 percent chance of success means very
little when you have failed twice. This was a life or death decision – a
certain doom if genetics went badly again.
As in every turn of this journey, our decision to do this
again naturally – and we very nearly went ahead with IVF/PGD – isn’t for
everyone. If you are a genetic carrier and you are considering natural
conception and genetic roulette, please don’t plant my story in your head as a
story of success. Your chances, while statistically the same as mine, must be
weighed within your own situation, within your own genetic disease.
If you had asked me last year about another baby, I would
have cried my answer into your shoulder – “I don’t know.” To family, we were
blunt – no more dead babies.
Though I still grieve my boys every single day, my heart is
ready for the child I carry now. This baby will not bring anything lost back to
me. He will not replace my lost boys nor diminish their place in my heart. But
he is part of the process of healing – he is what genetics gave after so much
was taken away.
He is a miracle.
