The Story of Silas

    August 20, 2018 | Stories by Gracepoint Church
    This article is used with permission from Ashley. Visit Ashley's blog at footballandstethoscopes.blogspot.com

    Before Dan and I got married, we spent some time thinking about what our future family may look like. We weren’t sure for a while if it would even be possible to have children, thanks to Dan’s chemotherapy treatments. Regardless, we hoped that we’d be able to have at least one child—God-willing, even 2 or 3.

    After we had Abe, it was fairly simple for us to decide that we wanted him to have a sibling. Fortunately, God apparently agreed with this decision and blessed us with our Connie Bug.


    Now, I was raised as one of two kids, and Dan was one of three kids. Life was falling into a pretty steady rhythm with just our two. Sure, parenting had hard days, but our little team was doing a pretty good job.

    The questions became: Do we want to add to our family or move forward in different areas? Should we focus on shifting from me at home to me back at work? Could I train for a marathon at this point? Were we going to homeschool or send the kids to public school? Should we become more involved with community activities like sports or church groups?

    Well, come January, our decision became a lot simpler when I was staring at two pink lines…

    Early pregnancy went as expected: I was exhausted, nauseous and getting my butt kicked by migraines. But, the baby was growing happy and healthy, as far as we could tell.

    We had done all the genetic testing and blood work with the other kids, and everything was fine, so we decided to just skip the extra trip to the lab.

    Later, though, when we had a our nuchal translucency scan (an ultrasound that measures the skin behind the baby’s neck, which is bigger in some genetic diseases), I couldn’t shake a weird feeling that I needed to do the blood work. In all likelihood, the minor abnormal value found on the scan was nothing to worry about, but seeing some reassuring numbers would really make this anxious mama feel better.

    Fast forward to May, when an unexpected call came in from Kaiser’s genetics department. My blood work had actually shown that we had a 1/57 chance that our baby had Trisomy 21—also known as Down Syndrome. The doctors wanted me to come in for a more intensive ultrasound called a Level 2 ultrasound to see if there were any “markers” that would point us to a more definitive answer.

    At that ultrasound, we found out that we were having another boy and that he did, in fact, have a few concerning findings. A short nasal bone, a strange bright spot in his heart and another in his bowel. These findings could mean nothing, but taken together with my preliminary blood work, they painted a picture that needed to be investigated.

    The genetic counselor gave us two options: another lab test called the Noninvasive prenatal test (NIPT) or an amniocentesis. The NIPT would require just a blood draw from me and would be a 99% accurate screening for Down Syndrome. The amnio would would be 100% diagnostic, but would require a needle aspiration of amniotic fluid through my uterus. The amnio would also carry a small risk of miscarriage.

    Dan and I decided that the risks weren’t worth the 1% difference in certainty, so I had the NIPT labs drawn that day.

    One week later, on May 16th, I answered the call from the genetics counselor. Though I somehow already knew what she would say, her words still came as a shock.

    “Your NIPT results show that your baby has a 99% chance of being born with Trisomy 21.”

    It was official. Our son had Down Syndrome.

    The following weeks included more conversations with geneticists, pediatricians, my OB team and a cardiologist. Nearly every medical professional we spoke with was encouraging and supportive, giving us information about all of the new opportunities for people with Down Syndrome. Between early intervention with physical therapists and occupational therapists and dozens of advocacy groups, Down Syndrome is no longer a reason for despair and heartache. (We'll explain more about DS at the end of this post!)

    Only the pediatric cardiologist attempted to discuss termination of the pregnancy. This was never an option for us. Our son may be chromosomally different, but he was still our son.

    From a physical standpoint, our baby looked very healthy on the ultrasounds. No birth defects or growth restrictions were noted, so my pregnancy would proceed much like any other pregnancy. I would have a few more ultrasounds to make sure that he was growing normally and that my placenta looked healthy, but otherwise? We wouldn’t truly know anything more until after he was born.

    The last months of pregnancy went fine. We flew to Vermont and back for a wedding, I drove to LA and back for a concert, and we managed two crazy kids. By September, I was VERY ready to not be pregnant anymore, but Silas didn’t show any signs of wanting to greet the world until when a contractions started up with a vengeance at an OB appointment. And then they stopped. For a week. By my next OB appointment, my doctor was scheduling my induction at 39 weeks to prevent another accidental home birth. Silas needed to be born in a hospital with a pediatric team readily available.


    So, we geared up for Saturday, September 30th, being the day we would meet our new son. I was not thrilled about the prospect of an induction, but tried to resign myself to doing what was best for Silas. Still, the realization that labor was imminent and that we were actually going to become the parents of a child with possible health complications hit me like a ton of bricks. Tuesday night brought a panic attack and little sleep, though also lots of prayer and some unexpected snuggling with a sleepless Connie.

    Wednesday? No signs of labor. It was a normal day of laundry and toddler-wrangling and trying to not be impatient or cranky.

    Thursday? I woke up to contractions. I didn’t say anything to Dan at first because he was getting ready for work, and I figured they would just go away. They didn’t. They got stronger and more regular. I walked to the bathroom—slowly. It was go-time.


    We made fast work of getting ready, calling Dan’s mom to watch the kids, Dan calling off work,
    and driving to Sacramento as we were still prepared for a fast arrival like Connie. Unfortunately, Silas had his own plans to make us wait. I was only dilated to 3 cm, but with my history and Silas’s diagnosis, they admitted me to L&D. Labor stalled shortly afterward, so we walked dozens of laps around the unit trying to avoid pitocin.

    Finally, around dinner time, contractions reappeared. I kept postponing getting rechecked by the midwife, for fear of being told that I wasn’t progressing. By 10pm, I could barely move. My amazing nurse noticed a difference in my demeanor and movement, called the midwife and started prepping the room. I was able to lay down for the midwife to check my progress but failed drastically in getting back up. Within 20 minutes, my water broke and a few minutes of pushing resulted in the birth of Silas Benaiah.

    When they laid him on my chest, there was no doubt in my mind that his diagnosis was correct. Silas looked so much like Abe when he was born, but his eyes were distinctively different. He was dusky and breathing, but not well. The pediatrician had been there for the delivery and took him to the warmer to begin her assessment. He finally began to cry but had trouble keeping his oxygen levels up. I was allowed to hold him and let him try to nurse as long as blow-by oxygen was near his face. Other than his oxygen levels, the pediatrician told us that there was very little evidence of Down Syndrome traits. No heart murmur, only mild hypotonia (low muscle tone), and proportional limb lengths.

    As the night progressed, Silas had to spend a good deal of time in the Special Care Nursery (low-level NICU) because he was still struggling to maintain his temperature and oxygenation. I had sent Dan to go to sleep so I could take the night shift, as the adrenaline from delivery was still keeping me amped. Plus, since the delivery was unmedicated, I was free to go back and forth between the nursery and my room.


    The first 24 hours of Silas’ life were difficult. He nursed very well—when he was awake. This caused issues as his blood sugar had become an issue as well. He ended up needing a couple doses of rescue dextrose and formula supplementation to carry him through while we awaited my milk to come in.

    Luckily, Silas was allowed to room-in with me in postpartum by the afternoon, which meant Abe and Connie could meet their little brother. The meeting was hectic and sweet. I had missed my big kids, but they were having a blast with their Ema. They were instantly in love with their new baby brother.

    By Saturday, his temperature, oxygen and blood sugar issues were resolving. He remained stable throughout the night and had an echocardiogram to check for heart defects on Sunday morning. With the cardiologist’s and neonatologist’s blessings, we took our little guy home at lunch-time on Sunday.

    So began our life with three kids!

     
    A note about Down Syndrome:
     
    This post may have come as a surprise to many, as we did not disclose Silas’ diagnosis publicly before his birth. This was not due to embarrassment or shame, but rather we wanted to have time to privately prepare our hearts and minds for his arrival. There are many misconceptions about Down Syndrome, which lead people (well-meaning or otherwise) to say unkind or unsupportive things. Keeping the diagnosis to ourselves, our families and some close friends allowed us some peace without having to battle others’ opinions.

    We are not sad or disappointed with our son or his diagnosis. Silas is not a mistake. He is made in the image of God just like our other kids. In fact, we chose Benaiah as his middle name because it means “God builds up” or “built by God”.

    Will life be different? Yes.

    Will we learn a lot? Yes.

    Will this affect Connie and Abe? Yes! Studies have consistently shown that siblings of children with DS become more compassionate and open-minded and caring than other children.

    Will there be difficulties and struggles? Yes, but that would be true with the parenting of any child.

    Please DO NOT express sadness, pity, or regrets for our new circumstances.

    Please DO celebrate our new child with us! He is a blessing and we are overjoyed to be his parents.

    For those who do not know, DS is a genetic abnormality that occurs spontaneously and without cause at conception. There is nothing that could have been done to prevent it, and nothing Dan and I did caused it. DS is not a disease or contagious in any way.

    Simply speaking, we all have 23 sets of chromosomes, which are the blueprints for our bodies. Down Syndrome is also known as Trisomy 21 because there is an extra 21st chromosome—3 instead of 2. This extra chromosome is present in every cell of the body and is responsible for the traits and abnormalities common to DS.

    Each person with DS is affected differently and to a different degree. Cognitive disabilities, low-muscle tone, upturned eyes, heart defects and various other physical characteristics are common.

    Silas has the distinctive almond-shaped eyes, though the rest of his little face is almost identical to his big brother as a baby. He does have a mild heart defect (called patent ductus arteriosis), but the cardiologist is hopeful it will heal on its own. Silas also has mild hypotonia seen mostly in his neck strength—however, he is much stronger than expected. He has already rolled over at only 3 weeks!

    We will not know how his cognitive abilities have been affected until he gets older. Until then, we treat him as we would treat any new baby. He will get physical therapy and occupational therapy beginning in a couple months to help him as he starts trying to get mobile and as he begins eating solids.

    He nurses very well and is gaining weight normally. As Abe frequently tells us, Silas eats and poops and sleeps a lot. He is also quite good at being adorable, but I am severely biased.

    We are excited to see what the future holds with the new addition to our family, even though we know some of it will be challenging.
     
    Please pray with us for wisdom and patience and joy as we raise our kids.

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