As many of you have heard (and surprise to the rest of you, we just haven't seen you personally to tell you), Jeremy and I have been expecting! Physically, it's been an easy pregnancy so far but after having a high risk situation with Seth it's been a challenge emotionally. We've felt very guarded about getting excited and have heard that's a normal reaction after going through so much before. I've told many of you that until the baby gets here and is healthy I won't hold my breath.
Last week our fears were realized during a routine ultrasound. The scan showed a defect in the baby's heart and an amniocentesis delivered the news of a chromosomal abnormality called "Trisomy 13". The doctors were pretty surprised, since everything else looked great. This condition affects roughly 1 in 15,000 babies, and is caused by a genetic mutation that is completely random and not inherited. The doctors we've seen said they have never heard of a couple having two pregnancies that are so rare, random and unrelated to each other. Jeremy and I can't decide to never gamble again or run to Vegas immediately!
So what does this mean? Trisomy 13 is a condition that is often described as "incompatible with life". Although there have been a handful of children who live for a few years, most are either stillborn or only live a few days after birth. Along with the heart condition, the situation and outcome is worse. The life support system will start to fail outside the mother's womb once the umbilical cord is cut. Most couples decide to terminate the pregnancy upon diagnosis, and I can understand why. Jeremy and I see it differently though, and have decided to continue with the pregnancy as long as it lasts. Sometimes a woman will carry the baby to term, other times it's heart stops beating earlier and the birth is induced. Since every pregnancy is different we have no idea what to expect time-wise. If the baby survives birth we will follow a "comfort care" plan and not pursue heroic measures or have an operation done on the heart.
Through all this, we've discovered we are having a girl. We had already picked out the name Elizabeth a long time ago if it was a girl, but hadn't thought of a middle name. Immediately after we found out about the heart defect, I felt the Lord put the name Joan on my heart. Joan? I liked the name, but didn't think Jeremy would go for it. The prompting didn't subside, so later that evening I told Jeremy that I thought her name should be Elizabeth Joan. He said that was fine, with a look that said "Go ahead and name her Elizabeth Millipied for all I care at this point". Early the next morning I woke up and looked up the meaning of the name Joan. The words, "God is merciful" filled my heart as I read them. I held on to that promise through the two days it took to get the genetic tests back, and do believe that letting go of this baby at the beginning of her life is so much easier than always having to wonder if her heart will last another year.
Jeremy and I just would like you all to know that although there have been, and will continue to be many moments of tears and cries out to God, we are ultimately at peace with this situation and are looking forward to what this will mean for our future. Although this is considered a "fluke", we believe that there is a plan for our lives and this is part of it. We are clinging to the words of Romans 8:28, "And we know that in all things God works through the good of those who love Him, who have been called according to his purpose." We have been so richly blessed in our marriage and in life together, especially having Seth as part of our family.
Things to consider as our friends and family:
Please DON'T:
Assume you know how we're feeling at any given time.
Try to take this on as your own situation.
Tell us what you would do in our shoes or what you think we should be doing.
Call us with your condolences, email is fine if you want to express something.
Please DO:
Ask us any questions you'd like to.
Continue to hang out with us and not feel like you're walking on eggshells.
Let us know if you know anyone who has delivered a baby with Trisomy 13 or 18 that we could connect with.
Invite me to baby showers and talk freely about your pregnancy if you're expecting. Let me decide to participate or not.
Forward this email to anyone who is not on the address list, but you feel should be on it. I don't have everyone's email address. Also feel free to talk about this with others.
Thank you for being part of our lives. We value you all as our friends and family and are blessed to have so many people to lean on. We will continue to update you all via email as we go through this process. Please keep us in your prayers as we live out the promise that "God is merciful".
Love, Jeremy and Josey Horst
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