January is a hard month for me, it has been for the last 11 years now. It never used to even cross my mind, other than the fact that it was cold and snowy and awful outside. Now it has more meanings. Most people think of it as a month of renewal, new year, new you, new outlook etc. For me, its a month when I come to terms that I am surviving one more year without my first daughter, because of one extra chromosome, one cell division error that changed who I am down to my very soul.
When I found out I was pregnant, I had just turned 23- I was not married and not planning on that or a family in the remote future. I was living out my early 20's the way most everyone did, just barely getting by, realizing that a college degree and a pencil skirt won't necessarily guarantee you a job that you love or that makes a lot of money. I didn't realize I was pregnant until the second trimester and when those two pink lines appeared I had never been more terrified. Of course I panicked, but eventually wrapped my head around it, formed a plan with my then boyfriend and accepted it. I made her my #1 priority and started what I thought was a bumpy road with a happy ending.
Due to my unplanned-ness I had two ultra sounds trying to determine exact gestation. The second presented very alarming markers- a hole in my baby's heart, 1 non -functioning kidney and only 1 umbilical vessel instead of 2. After meeting a genetic counselor and learning all of the worst case scenarios I knew I just had to know the exact birth defect I was facing, if any at all. Amniocentesis would confirm one of my worst fears: Trisomy 18. The baby girl that I never knew I wanted was not likely to survive gestation, birth or at best a few days. My world was shattered into pieces. It was hard to breathe, hard to function. I walked around in a daze. Sometimes crying, sometimes angry, most often bitter and resentful of people with healthy children and damn near enraged when I observed people taking them for granted. I'm not sure anyone who has never struggled with fertility or a birth defect can fully appreciate what a miracle a live healthy birth really is; all of the tiny nuances in the reproductive process that can mean life or death, for the fetus and sometimes for the parents.
So I formed a new plan- not having a plan. It is basically torture for someone who his highly organized and a compulsive planner to be told," you can't plan for this," "you shouldn't buy a crib or clothes," " you should just take it one day at a time." I had to cancel and squash any talk of a baby shower and let everyone know they should no longer be excited or happy for me.
Trisomy 18 is a third copy of the 18th chromosome, similar to Down's syndrome but less compatible with life. Babies born with Trisomy 18 usually can't breath on their own, take food by mouth, or cry very loud. They have poor circulation and often die in utero, are stillborn or live for a few moments, hours or days.
So I prepared myself for the worst, and the day my water broke, 2 weeks before her due date, I steeled myself for the worst case scenario, a silent delivery room, tears, sadness. When that moment came, and she was finally out, they laid her on my chest and rubbed her with a towel, I stared without breathing and saw her tiny chest moving as her lungs tried to work. I looked at the nearest nurse and said "help her please." She applied an oxygen mask and she managed a cry, a tiny one, but I heard it. Everyone in the room was in tears. I was able to hold her and family was able to come and see her. She passed away 9 days later, at home, on February 7, 2007. I hope everyday that she new ho much I loved her and she left this world without pain.
Trisomy 18 is not the only fatal birth defect, nor is it the only one that can change your concept of parenting and turn your world upside down. There is Vader Syndrome, 5pMinus Syndrome, Downs Syndrome, malrotation of the intestines, even more rare ones such as anencephaly, muscular dystrophy, and unfortunately the list goes on and on. Trisomy 18 occurs 1 in 2500 births, and that statistic is only live births; it is often one of the causes of early miscarriage.
I hope that this month more people become aware of birth defects, the devastating effects they have on parents, marriages, families and what can be done to prevent some of them, and what we can do to further research them for prevention. Many years ago we didn't know what caused any birth defect, but now its common knowledge that you shouldn't smoke, drink alcohol or do drugs during pregnancy. Not so long ago we didn't know what foods to avoid or to consume to help decrease risks and promote healthy moms. It is my hope that someday the list of birth defects without a cure is much shorter, and just maybe, I can see that in my lifetime.
Josie, just a few hours after she was born, 1/29/07
The only professional picture taken of her, prior to oxygen and feeding tubes being placed.
Thank you so much for sharing Josie with us! So much love and hugs to you dear friend.
Brandi, Josie is absolutely beautiful (I've never seen the bottom photo). Thank you for sharing your story and what this journey means to you.
Hug and love,
Brandi, thank you for sharing Josie's story with us. The professional photo you shared is beautiful and so special. I'll be thinking of you and your angel well into next month as well.
We help moms have full-term pregnancies and healthy babies. And if something goes wrong, we offer information and comfort to families. We research the problems that threaten our babies and work on preventing them.
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