Loving Landan

A little background on our family to really understand where were at when we got Landan’s diagnosis:  Andy and I have five kids.  After our third, we decided that we were content and would be ok stopping at three.  Andy had a vasectomy referral, but the doctor’s office sent two referrals – one to our old insurance and one to our new.  Andy showed up for his consultation on the right day, at the wrong doctor’s office.  We decided at that time that we weren’t convinced we were ready for a permanent decision.  We weren’t sure we wanted more, but we weren’t sure we were done either. 

A year later we were pregnant with our fourth.  We knew we were ready to be done this time. Due to Covid, Andy’s vasectomy was pushed off multiple times and finally occurred about 6 weeks after we had our fourth.  Four months later, we ended up pregnant.  My pregnancy with our fourth was awful.  I was sick 24/7 the entire pregnancy.  I suffered from post partum depression, and the DAY I woke up finally feeling like myself again, I realized I was pregnant.  Andy always has found this ironic. 

I experienced perinatal depression during my pregnancy with Landan.  Not only was I barely coming out of my PPD, having back-to-back pregnancies put me at higher risk for this as well. There were days getting out of bed was too much work.  I was so overwhelmed by the thought of being pregnant again, having babies 14 months apart with three kids old enough to keep us busy with extracurricular activities, etc.  There were many days I cried over these things.  I had no idea how we were going to make things work.  I was never concerned about our love for this fifth baby, but I was not thrilled about it all.

The end of May 2021, Andy and I went in for my 20-week anatomy scan.  We were supposed to be leaving for Wyoming right after, the first step in moving our family out of California.  My doctor happens to meet with his patients immediately after these scans.  The scan showed that Landan had a thickened nuchal fold and a heart defect, markers for a chromosomal abnormality.  My doctor had already called a maternal-fetal medicine specialist and she wanted to see us as soon as possible.  Andy and I canceled our trip to Wyoming so that we could be available to meet this new doctor as soon as they could get us in.

Our first ultrasound with the specialist confirmed that Landan had a heart defect and the thickened nuchal fold.  He had no other soft markers, but there were certain things they were unable to rule out (rocker bottom feet, appendages on his left foot, etc).  We were given the option to have an amniocentesis if we wanted an exact diagnosis.  We chose to start with just a blood screening (we opted out of these for all of our pregnancies) due to the risk that comes along with having an amnio performed.  We also knew that we would never opt to terminate, so having an exact diagnosis was unnecessary unless we felt we needed it.

While we were waiting for our blood results to come back, we had our initial consultation with the genetic counselor.  Based on what she saw in the scans, we were told to expect that Landan would be diagnosed with trisomy 13 or 18.  There was nothing specific they saw, but the things they couldn’t rule out led her to believe this.  Andy and I spent about 10 days waiting for the results, believing that we would likely lose our baby before we ever met him.

Our results came back with a 90% chance that Landan had trisomy 21 – Down Syndrome. We felt that these results were strong enough that we did not need to move forward with an amnio for an exact diagnosis.  We would have Landan’s genetic testing performed after birth, which was done and confirmed.

The second we got our blood results back, my life calmed.  My fears, my dread, my hesitations about this fifth pregnancy disappeared.  It all made sense to me.  Andy had to work a little harder for that.  He had essentially no experience with Down Syndrome.  And the internet doesn’t necessarily paint a great picture.  We were given a list of resources and websites to visit and research.  And when we would come across a family who had a child with Down Syndrome, Andy would speak with them. His fears revolved around possibly needing to provide life-long care for Landan, how his delays and needs might affect our other kids’ lives.  But those fears were squashed.  We didn’t know what Landan would need, but we knew we could do everything possible to provide it for him.

Through our research we found some statistics that we will never forget.  Almost 2/3 of pregnancies in the United States that receive a Down Syndrome diagnosis are terminated.  In other developed countries that number is much higher – as high as 97% in some places.  In many countries, children born with Down Syndrome, especially those with a birth diagnosis, are dropped at orphanages, where there are little resources for them, and they spend their lives in state-run facilities. 

Down Syndrome does come along with developmental delays and a higher risk for certain health issues.  About 40% of these children have a congenital heart defect.  But they also have the potential to do everything a typical child will grow up to do.  And to top it off, they are significantly more likely to be happy with who they are, how they look, their life, etc. then your typical population.  Siblings of kids with Down Syndrome overwhelmingly report positive experiences, a better outlook on life, enrichment of their lives because of their siblings, etc.

These lives are no less worthy than any typical life.  I’d even say that if you don’t look strictly at worldly standards, they positively contribute to this world at a rate higher than most people do.  We recognize that not every parent facing a Down Syndrome diagnosis has the level of resources for therapies and early interventions that we did.  And knowing we had all of that certainly helped us feel like we could take on the task of providing Landan the very best we could.  But our largest comfort came in knowing that God knew Landan’s name.  He knew Landan’s form and what people might see as shortcomings and knew all that Landan would be able to do with that.  He was created by God as he was and God would equip us to care for him.  Landan was a perfect creation.