A couple I'll call M and J contacted me recently through the auspices of Now I Lay Me Down to Sleep, for whom I shoot remembrance photography, in hopes that I'd be able to photography their newborn when he sallies forth into the world sometime in the next month. Little N has been diagnosed with the chromosomal abnormality Trisomy 13. I quote from the website livingwithtrisomy13.org:
Also called Trisomy 13 Syndrome, having a third (extra) number 13 chromosome, occurs about 1 in 5,000 live births. Trisomy 13 children have multiple abnormalities. Some include heart defects, brain defects, cleft lip, cleft palate. The most severe are visual abnormalities, omphalocele, proboscis and holoprosencephaly. Because of the many abnormalities, we believe all of these children are survivors if they reach their mothers arms. They are true miracles of life. Many only survive outside their mothers womb a few short minutes, hours or days. While others can go home and survive months. Sadly, many of the children with Trisomy13 (Patau Syndrome) do not reach their first birthday.
At 29 weeks along, M and J know they are having a son. They have an older boy, D, who is just the sweetest little guy ever. When they visited my studio on a frigid evening recently for a few maternity photographs, even though it was bedtime little D managed to be nothing but engaging for the whole hour and a half. Quite an accomplishment, I'd say, and I'm so pleased he's able to be involved with his tiny brother's life. Even if he's too young to remember all this, he'll have these photographs.
All during the session, M was feeling, and seeing big strong kicks. Little N is definitely a fighter.
I wish M and J days of peace ahead. I am honoured to be in their lives.
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