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Thursday, March 12, 2009

God's Hand at Work

It's been a while since I gave an update on our baby Rebekah, so I wanted to make sure I shared the news from my last ultrasound. Since some of you reading my blog my not fully know/understand about trisomy 18, I am going to recap what we are going through so you can appreciate the significance of where we are today.

Trisomy 18 - 101
I am currently 32 weeks pregnant with a baby girl who has been diagnosed with Trisomy 18 through amniocentesis (a 100% accurate diagnosis). Trisomy 18 is caused by an extra 18th chromosome. (Downs Syndrome is an extra 21st chromosome.) It is much more serious than Downs, in that 90-95% of the babies die in utero (stillborn). Of those that survive, only 10% of them make it to their first birthday (so like 1% of the trisomy 18 pregnancies) and the median lifespan is 14 days.

In most places in the country, abortion (based on AFP or quad test results only, or a single marker on an early ultrasound) is highly encouraged. This was never an option for us, so we choose to carry her and love her for as long as God will allow us to. The only reason we consented to the amniocentesis in the first place was because she was showing so many birth defect 'markers' on our 20 week ultrasound, that we needed to know what we were up against in order to prepare.

Her early markers included: choloroid plexis cysts on the brain, a 2 vessel umbilical cord (they are supposed to have 2 arteries and 1 vein, mine only has one of each), a VSD - hole in the bottom chamber of the heart, 1 kidney, and a 'rocker bottom foot' (club foot). There were also other things like retarded growth, head shape, etc. The only way to know for sure what chromosome abnormality we were dealing with was through an amniocentesis which looks at cells in the amniotic fluid. These are derived from the cells that also make up the baby. Based on all of the markers and the result of the amniocentesis test, our specialist is sure we are dealing with full trisomy 18 - labeled as incompatible with life. As you can imagine, this is a devastating diagnosis for any parent. Between this then learning the statistics of what a baby labeled as 'incompatible with life' means, we have been heart-broken for our baby girl.

In addition to these markers and things you can see on an ultrasound, there are a lot of other potential issues that just can't be detected from an ultrasound - how the brain is going to function, if it will tell the organs how to do their job, organ issues that can't be detected via ultrasound, etc. Many trisomy 18 babies die in their sleep because they simply stop breathing or the heart gives out. Many of them don't have an esophagus that attaches to their stomach, and even when they do, they cannot suck or swallow properly. All trisomy 18 babies have extremely retarded mental and growth patterns and, even if carried to term, will appear in size and development as a preemie. I was warned that due to her chromosome issues, I would have all kids of problems like gestational diabetes, preeclampsia, toxemia, polyhydraminous (too much amniotic fluid due to slow growth of baby of not processing the fluids correctly - which can lead to breathing problems in the mother, prolapsed cord, preterm labor, higher risk for additional birth defects, etc).

On top of all of the medical issues, we also have to deal with the cold-heartedness of people and medical staff that do not see a reason or purpose to carrying a baby like this to term. When asked early on what medical interventions we should think about, our geneticist stated that we should "save your money and send your older kids to college." I've heard comments like "that's what happens when you have a baby at 40." Many people have commented "At least you have 4 healthy boys!" (as if that would offset the pain and suffering of going through this experience.) An OB even tried to scare us into complying with their standard practices by making us feel that we would not have a say in how the birth experience would play out. Yes, we are asking for some out-of-the-ordinary care, but nothing that will cause the doctors or hospital extraordinary costs or change in process. This is a situation that is out of the box of normalcy. Some things got to give!

OK, now for the POSITIVES... I had an ultrasound on 2/27. In 3 weeks, Rebekah had gained 15 oz (almost a whole pound!) and was about 2lb 10 oz at 30 weeks. If she continues on that growth pattern - she'll be well over 5 pounds at birth! She actually was on the chart (even though it was at the 3% range)! In addition, we could NOT see the hole in her heart. Neither could the ultrasound tech. I am telling you, it was big enough 3 weeks prior that, even to Michael and me, it was evident. The doctor will not confirm this, of course. We could no longer see the cysts on the brain - although the tech did say that it becomes harder after 28-29 weeks to see into the brain because the skull starts to solidify more. We could see obvious fluid in the stomach and bladder - which indicates that she is most likely swallowing and her one kidney is working. She is very active and, since Dec, we have seen no new concerns show up. We do not see the constant clenched fists so typical of these babies. My amniotic fluid levels are NORMAL and I have had NO pregnancy complications/issues. My specialist actually thinks she will make it to term.

I am humbled and thankful for all of the friends and even strangers that are keeping her in constant prayer. I cannot tell you how bathed in prayer this baby is - and we do really feel the hand of God at work in her. She will make an impact on this world whether she is with us for minutes, days, or years, and for the first time in this pregnancy, I have truly allowed myself the HOPE of being able to hold my baby girl alive and spend time with her.

Thank you to each and every one of you sharing this journey with us, encouraging us, grieving with us, praying with us. I feel very blessed and loved. Please continue to pray for a miracle, that we will be surrounded by godly and compassionate medical staff that have a respect for life and our choices as the parent of this baby, and for me to actually be able to breastfeed Rebekah (I don't think this has ever been done with a trisomy 18 baby!).


Numbers 6:24-26
The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you; the Lord turn His face toward you and give you peace.

Psalm 139:13-18
You made all the delicate, inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous - how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered! I can't even count them; they outnumber the grains of sand! And when I wake up, you are still with me!


  1. Oh Susan...this is AWESOME!!! I read before when you posted about the latest ultrasound, but didn't get a chance to respond.

    To read it all together here is just amazing. And how fitting...."How Great is Our God" was playing as I was reading this!!!

    I pray for a true godly miracle for you guys!

    Enjoy every precious moment you can with that baby! God will bless you!!!

  2. Hi Susan - I haven't been to your blog in a while but I have been thinking of you and praying for the little one. I'm sorry that people can be so hurtful. I am encouraged though by all the things you saw (and didn't see) in the last ultrasound and I hope tomorrow's ultrasound gives you good news. I was only 2 lbs 1 oz when I was born - so she's bigger than I was! I'll have to tell you about that some time. - Victoria