Finding Out

     I am 27 weeks pregnant with our beloved daughter, Heidi Elizabeth.  This is a significant number, as it marks 10 weeks since we received that phone call with the final diagnosis: "Your baby has full Trisomy 18".  This was the phone call that confirmed what we had feared and that seemingly contradicted all of our prayers.
     At 13 weeks, just after we announced our pregnancy and as I entered my second trimester, just when we thought we were "in the clear", I visited the maternal fetal medicine doctor for the first time as part of a routine screening that most pregnant women get.  We had a ridiculously cute ultrasound of our daughter, and everything looked completely fine.  It was all sunshine and rainbows!  In fact, we were feeling relieved that there were no indicators that the baby had down syndrome.  Everything looked completely normal, and our baby was so freaking cute. At the end of the appointment, when the doctor was summarizing all of the good news for us, he asked if I would like to get a blood screening just to be sure our baby didn't have any type of chromosomal disorders.  He assured us that our baby looked completely normal and let us know that many doctors require this blood screening; he just likes to give his patients the choice.  As a first time mom, I didn't know what to do, but I figured I may as well get the screening, just for peace of mind confirming that everything was, indeed, okay.

13 weeks ultrasound

     A week later, I got a call from the doctor with the screening results.  I was home on winter break (I'm a teacher), and my husband (who works from home as a graphic/web designer) was out in the living room with his five cousins that were staying with us over the holiday.  I answered the call in our bedroom, because, how could I realistically take a phone call in a house filled with 6 guys?!  The doctor told me that my blood test screening results were in and that they showed a 1% chance that our baby had Trisomy 18.  He immediately reassured us that this screening provides a number of false positives.  With only a 1% chance of Trisomy 18, it was VERY unlikely that our baby actually had this diagnosis.  We were assured that the numbers are significantly higher on the screening for babies that actually have Trisomy 18.  He asked if we could come in to discuss the results further, and we were able to schedule a time later that day.  After hanging up, I started to break down.  No one wants to get a call like that about their baby.  Even if it's only a 1% chance, it's still scary and unexpected.  I couldn't pull it together enough to walk out into the rest of the house with all of our guests, so I texted my husband who thankfully came immediately back to the room.  I tried to explain what the doctor said.  I couldn't even remember the name "Trisomy 18", something I'd never heard of before, as I fumbled through.  In fact, when on the phone with the doctor minutes before, I asked, "What's the name of that condition again?"  He told me not to look it up or Google it, as it would only needlessly scare me.  Through my fumbling, confused explanation, Andrew was so sweet and understanding.  He cried with me and prayed with me, and in a matter of hours, we were on our way to the doctor's office.
     After meeting with the doctor, I felt reassured.  This was probably a false positive.  A 1% chance that our baby has Trisomy 18 means a 99% chance she does not!  He told us that some families choose to do nothing and see how the baby looks in upcoming ultrasounds, some choose to get another blood test screening that can be more indicative, and some get an amniocentesis which provides a 100% accurate diagnosis but has a very small chance of causing a miscarriage.  We felt reassured that this probably was not something our baby had and opted for the second blood test screening just to put our minds at ease.

It's a GIRL!

     About a week later, we received the results from the second blood test screening and started to learn that when the doctor calls with blood test results (instead of one of the med techs or nurses), it's probably not good news.  We found out that this time the results showed that our baby had a 20-30% chance of having Trisomy 18.  NOT the news were wanted/expected to hear!  We decided to schedule an early ultrasound for 16 weeks to see how our baby was developing and if there were any indicators of Trisomy 18.  We were worried but hoped for the best.  After all, there was a 70-80% chance she was fine!  Note- This was also the blood test that told us we are having a baby GIRL!  The doctor almost forgot to tell us the gender amidst the unsettling news, but we asked at the end of the call and were immediately smitten with the thought of parenting a little girl!
     When we went in for the 16 week ultrasound, we were so nervous, scared, worried, hopeful, etc.  We had been praying and praying that this was all a false alarm and that everything would be fine.  We went in for the ultrasound, and to our delight, everything looked completely fine!!! Two of our doctors had assured us that you can always find signs of Trisomy 18 in an ultrasound as early as 16 weeks.  In fact, we were even told that the only reason they can't say "always" is that there is never an "always" in medicine.  We were SO reassured!  Everything looked fine!  No clenched fists, bowed legs, or other indicators of Trisomy 18.  She was only a couple of days smaller than she should be, which was not concerning.  We were given the option of an amniocentesis for a final diagnosis.  The doctor discussed this with us in depth and was willing to answer all of our questions regarding its risks.  He even gave us time to talk to each other privately about it before we decided if we wanted the procedure done that day, a potential day in the future, or not at all.  We prayed together and asked God if we should do it but felt no clear direction, so we finally decided to get the amnio that day.  Our doctor was extremely experienced and successful with this procedure, so we felt as comfortable as we could, and we wanted to rule out Trisomy 18 once and for all   The procedure went smoothly, and we were told that we would get the FISH (preliminary) results later that week.  These would be 99% accurate.  The final, 100% accurate results would come in about a week and a half.  We left the doctor's office feeling great!  After all, you can "always" find indicators of Trisomy 18 on an ultrasound as early as 16 weeks, and our baby looked completely fine!
    A few days later, we found out that we are one of the reasons there is never an "always" in medicine.  I will never forget this day.  I was in my classroom and saw that the doctor had called.  I knew it was about the results from the amnio and planned to call him back when my class was at lunch.  I rushed upstairs as soon as I took the students to lunch and called the doctor back.  I was on hold for a while.  That waiting was awful.  I felt so reassured after the ultrasound that everything would be okay, but in those moments waiting for those 99% accurate FISH results, anything was possible, including the thing that almost never happens.  Finally, about 5-10 minutes before lunch period was over and I was going to have to pick up my class, the doctor got on the phone and told me that the results showed that our baby has Trisomy 18.  He was gentle, kind, and honest.  He told me that these results are 99% accurate and that he's seen two cases before in which someone received the same FISH results we had but the baby ended up being fine in the final results.  Nevertheless, these were NOT the results we expected.  They're the results that no one is prepared to hear about their baby.  I broke down on the phone while sitting on the carpet in my classroom, a place where no one would see me from outside the room and unintentionally interrupt the phone call or my tears.  I went to the bathroom to pull myself together just enough to walk to the teachers' lounge and ask one of  my partner teachers to watch my class for a few minutes, so I could call my husband.  Thankfully, my partner teacher knew just a little bit about what was going on, as he had inquired about why I had an amnio when I'm so young (some require it if your're 35+).  All I had to say was that I got the amnio results, it looks like she has Trisomy 18, and I need to call my husband.  He was on it and took care of my class.  Because I had to go to the teachers' lounge to find him, a number of other teachers were in the room to experience the breakdown of a pregnant mother who, just moments before, got the news that everyone fears.  They were so sweet and supportive.  I called Andrew and tearfully told him the results.  He was home working, and the news hit hard.  We cried together for a minute, clung to the hope that maybe we're the 1% chance where these results are wrong (since we seem to dwell in the land of those small and unlikely percentages), and vowed to continue praying and trusting God no matter what.
     Crazy me was planning on finishing the teaching day.  I didn't know what else to do.  Thankfully, the teachers in the room pretty much forced me to go home and be with Andrew.  They talked to my boss for me, got my stuff from my classroom so I wouldn't have to go up there in front of all of my students, and even arranged a ride home for me.  It was so sweet and exactly what I needed in that moment.  I would've lost it on that half hour drive home by myself.  I'm so grateful that they were there in that moment!
     When I got home to Andrew, we cried and prayed and cried and prayed and hoped that somehow these results were wrong.  The next week of waiting on the final amnio results was so difficult, but God was with us through it.  To our surprise, that Sunday was actually "Sanctity of Human Life Sunday", and our church had a pro-life speaker come and deliver a powerful and gripping message.  We decided to go back that evening for a training he was offering in which he addressed the tough questions about abortion, questions like, "What if the unborn baby has a terminal diagnosis?"  This workshop couldn't have come at a better time.  We were in no way questioning our stance for our daughter's life, but it provided that reassurance that we were doing the right thing in standing for her life and that God was with us.  I got a feeling that God was preparing us to take a stand for our daughter's unborn life, but I dismissed it, deciding it would be better if she didn't have Trisomy 18 at all and if the final amnio results took that all away.

Surprise ultrasound at 17 weeks!

     During that week of waiting, we had a regularly scheduled appointment with our OB.  She was so sweet and did an ultrasound just so we could see our little girl (who looked great!).  She was direct in explaining that a baby with Trisomy 18 is "incompatible with life", something the medical world claims yet a number of Trisomy 18 babies continue to prove wrong.  We were also told that a baby with Trisomy 18 would be "more like a creature" than a baby.  She told us that we would need to consider terminating the pregnancy if the baby had Trisomy 18.  We immediately explained that we would continue the pregnancy no matter the results.  She told us that most people would terminate and asked why we would not.  "Is it for religious reasons? Ethical reasons?" she asked.  Andrew and I responded, "Both."  That's all we could manage to say under the stress of all that was going on and the pressure of an interrogation about why we wouldn't end our child's life.  She encouraged us to hope for the best results. We left with mixed feelings.  We were extremely upset by the dismal description of Trisomy 18 yet grateful for an unexpected ultrasound where we could see our little girl.  So the week went on with more waiting for the final results, and I promised myself that if the doctor called with the final results during the school day, I would not call him back until I got home that afternoon and could call with Andrew by my side.
     It was Thursday afternoon, and the doctor told us we'd get the final results by either Thursday or Friday.  I assumed that since office hours had passed, we would have to wait another excruciating day for the final results.  Then, we got a call from a number I did not recognize but chose to answer, just in case it was regarding the final amnio results.  It was the doctor (calling from his cell) to give us the final results: "Your baby has Trisomy 18".  He was gentle in delivery, but the news carried deep pain and hurt.  We had him on speaker phone so we could both hear him, and I'm sure he could hear us both weeping.  He mentioned that we would need to make decisions about whether or not to terminate the pregnancy, and we told him that we would without a doubt continue the pregnancy.  We're grateful that he has been supportive of our decision and marched onward with us, as have our OB and cardiologist.
     Less than an hour after getting this crushing news, we had to rush Andrew's grandparents to the airport, get to a District final soccer game my brother was coaching (and Andrew was assistant coaching), and take Andrew's sister who was visiting from out of town back to our house to stay with us.  The distractions were good and helpful, but it felt like we had no time to process and mourn this news.  Thankfully, a few weeks back (before the craziness began!), our OB suggested scheduling a babymoon at 17 weeks, stating that this is usually when pregnant women feel best: subsided sickness and the most energy with the added bonus of a cute mini bump!  We started looking into babymoon destinations and settled on NYC.  The cheapest flights and hotel rates fell exactly at 17 weeks like she suggested, so we booked this trip (without any knowledge of what would come in the following weeks).  As it turned out, this trip was scheduled for just 2 days after we got the final diagnosis.  We decided to go, even if the circumstances were far from what we expected when we scheduled the trip.  We needed to get away: to process, to mourn, to pray, and to celebrate the little life inside of me, even if medical professionals said it would be a brief life.  That trip couldn't have come at a better time.  We spent a lot of time exploring and enjoying.  We also spent a lot of time in our room crying and praying.  The timing was perfect, and God was in it.  He was with us.
     We decided that weekend that we needed to tell people what was going on.  Imagine a pregnancy where everything looks fine on the outside but you know your child's been given a life-threatening, life-altering diagnosis.  For us, it was easier if people just knew, rather than having to explain the devastating results over and over again.  We decided to share a post on Facebook with one of our daughter's recent ultrasound photos.  We shared the diagnosis and were able to communicate our outlook on it, the outlook we need others to join us in: that our daughter's life is valuable and that every moment with her is precious and to be celebrated.  We begged people to pray for her, because we know nothing is impossible for God.  We also shared her name: Heidi Elizabeth Hanssen.  This was not the cutesy way I thought we'd share her name with the world, but we wanted people to know who she is, that she's here, and that she matters. That was all at 17 weeks.
     27 weeks marks 10 weeks of knowing, but it also marks 10 weeks until I'm considered full term.  Since that final diagnosis, doctors have found a number of problems typical of Trisomy 18.  They saw that she is missing the corpus callosum (connection between hemispheres of the brain), that she has a cleft lip and palate, that she has a small pocket of spinal fluid on her brain, that she is about 2 weeks small (but growing!), that the umbilical chord is missing an artery, and that she had a VSD (hole in heart) and arrhythmia.  I say "had" because the VSD and arrhythmia which were once seen by our perinatologist and cardiologist are now GONE as of Heidi's most recent fetal echo!  Thank you Jesus!  All of these problems listed are typical of Trisomy 18, and none of them are necessarily life threatening on their own, however, when combined with the diagnosis of Trisomy 18, things are complicated.  All this to say, there's a lot that could happen in the next 10 weeks.  We're praying for a miracle, and we're grateful for the miracles we've received along the way.  Heidi went from having a hole in her heart to the hole being completely gone and healed!  This makes me feel like she'll be able to make it to term.  Her heart is strong.  We are assured that, no matter what, Heidi is in God's hands and she is our little miracle.  We love her so much and are loving every second of bonding with her!  Just like the last 10 weeks, we're doing the best we can to take these next 10+ weeks one day at a time.  We're praising God for every wiggle, squirm, and kick from our little girl who's growing stronger every day, and we're praying for as much time as possible with her, even for full life of total health.  Thank you to those of you have have joined us in prayer and in hope for our little girl.

Heidi at 23 weeks.  Keep being strong in Jesus, little one.
Psalm 139:14 I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.