it was Monday, june 22, 2009. that night/early morning i did not sleep well. i was up at intervals starting at 4 am and finally gave in and got up at 5:30. i’m sure it was because of the excitement of having our routine ultrasound that morning in which we hoped to find out the gender of our 17 week old baby. my appointment was early, and of all mornings, kate decided to sleep longer than normal. i set out her breakfast and then paced around until i finally went in to wake her up. she is so adorable when she sleeps. i stood there beside her crib for a few minutes, caressing her back before she finally stirred. she popped up into my arms and rested her head on my shoulder and we held each other for awhile. my morning was off to a wonderful start.
fast forward a couple of hours. it’s a boy! i’m in shock. i really thought i was having a girl. and then our doctor sees something on the ultrasound that caused her to refer us to a high-risk specialist, just to make sure there was nothing else going on. our hearts became heavy, but we were still hopeful that our son was going to be OK.
by wednesday morning, our hopes for a normal, healthy baby were dashed when one “marker” after another was discovered during our level II ultrasound, namely several “major structural heart defects.” i had an amniocentesis done that same day and learned the official results from that on Thursday, only a day later.
our worst fears were confirmed. the diagnosis is Full Trisomy 13, an extremely rare chromosome disorder which is not compatible with life outside of the womb. in fact, it is the worst condition a fetus can have and still somehow live and grow in the womb. if he survives the pregnancy, he is not expected to live long after birth. we were told by the genetic counselor that in our case, it probably wasn’t a hereditary condition, it was more of a “random” occurrence (up to 1 in 25,000) that took place at conception.
needless to say, it was the worst week of our lives. we went from being excited to finding out what we were having to realizing that we weren’t going to have a happy ending for now, in fact, we were in for a very rough road ahead.
what happens now
we believe that God alone is the giver of life and it is He who takes it away. when we told the high-risk specialist that there was no other option for us but to continue the pregnancy, he assured us in our decision and told us that every couple that he has ever known in his practice who has made this decision, were blessed and found much joy in the end result. regardless, we are trusting in God’s plan and provision for us. if He chooses to bless us through this, then that is great. either way, we know it is the right choice for our child. our prayer is that we would be able to hold him and to love on him, if only for a few moments.
we have many follow-up appointments scheduled in which we will find out more information each time we go. because our baby is so small now, the size of his heart is only the size of the fingernail on your pinky finger. it’s hard to predict exactly what is going to happen until the baby grows in size and the doctors can see it better via ultrasound. we have decisions to make as to where we will deliver, what is best for our baby, and so on. we also have funeral arrangements to make. never in my wildest nightmare did i ever think i would be doing something like that for my child.
how we are doing
some days it doesn’t seem real. both greg and i have said many times that we’re ready to wake up from this bad dream. watching that fateful ultrasound while it was being conducted last week made the situation seem distant and outside of me, if that makes sense. at that moment, it was taking place on a computer screen, not in real life. but when i feel the baby kick or move and it snaps me right back to reality. he is here. he is with me. this day may be all that he has for now. no matter how bad of shape he is in, i still have to take care of him the best i can and love him like he was perfect. he has no other mommy but me.
so….we are doing OK. we have our moments of disbelief, of extreme sadness, of numbness. but most of the time, we are completely submitted to trusting that God will bring us through this just fine, if not stronger than ever. it is not something that we can do on our own; we know we are being uplifted all day long in prayer. our new reality is that we cannot change the circumstances we’ve been placed in. so our choice in how to react is to make the best of them: to celebrate the life of our son, no matter how short, to be thankful and to praise God for his blessings and provisions, and to pray that others will be drawn to the Lord through the life of our son.