By Rebecca Price
“Incompatible with life” were words my husband, Parker, and I never thought we would hear, especially with our first pregnancy at the ages of 21 & 22. The words I never imagined we would hear are now the words that I will never forget.
Walking into the 20 week anatomy scan we were thrilled to figure out if we were having a boy or a girl. Little did we know that so much more is looked for on a routine anatomy scan. We figured out that day that the little baby we were praying for was a boy! I started doing all the clothes shopping wondering how I was going to wait another 20 weeks to meet our little guy. The day after my anatomy scan I was met with a phone call while at work “please call back, we need to do a repeat anatomy scan”. Four weeks after that phone call really started the craziest journey of our life.
Going in for the repeat anatomy scan, I did not really think much of it. They had reassured me on the phone that there was no issue, they just needed to get some pictures they did not get the first time. After the repeat scan, we were sent into a little room to wait for our OB, this was definitely not routine after an anatomy scan so I knew something had to be up. “A lot of fluid surrounding his brain and a pretty significant heart defect” were the words out of the doctors mouth. “We are referring you to maternal fetal specialists, you will hear from them shortly.”
We heard from them. The first words we heard were “This pregnancy is incompatible with life, if he does live it won’t be long or a good quality so you can terminate now if you would like.” That was the moment we felt Anderson would be a fighter and knew we would do anything we could to help him fight. A fetal MRI, fetal echo, massive amounts (like almost hospital record breaking amounts) of blood work, lots of tears, too many trips to the MFM doctor to count, meetings with specialists, and a failed non stress test, Anderson decided to join us at 32 weeks and 3 days on December 23rd, 2020 weighing 3lbs 14oz. Twelve short weeks after our anatomy scan, I guess I didn’t have to wait the 20 long weeks to meet him after all ;).
Our biggest prayer in the (very full) OR for his C-section was that he would be born breathing. The evening before, we made the decision that we would provide medical intervention to give him every fighting chance at life that he deserved. Not only did he come out breathing, he was crying too! Definitely the happiest I have ever been to hear a baby cry. Anderson was quickly whisked away to the NICU with Parker and his whole medical team. This started his 68 day journey of ups and downs that his NICU stay brought. I was able to see Anderson before he went upstairs, but not hold him. Definitely not how I pictured my first birth going, but if Anderson had taught us anything at this point, it was that different doesn’t mean bad.
With the countless scans, sonograms, and blood draws it was not until a few days after he was born that Down Syndrome was on the radar which led to his official diagnosis on December 27th 2020.
Anderson has always liked to keep us on our toes. We learned that along with his AV Canal heart defect that would require open heart surgery, he also had a prenatal stroke, likely before 6 weeks gestation that caused the excess fluid in his head. He went into heart failure at a few weeks old, this involved his cardio team trialing different combinations of meds until they found a combination that would hopefully hold off surgery until he was older. His NICU stay included measuring his head everyday so his doctors could monitor if he would need a permanent shunt put in place to drain the fluid. Although we were really hoping neurosurgery was one he could avoid, his head was growing rapidly, the ventricular taps were not working. We needed to do something to relieve the fluid, so a shunt it was, “frankin-ear” as Parker and I like to call it. We made the decision to have a Gtube placed at one month old because we knew we would need it in order for him to grow big enough for heart surgery. The NICU timeline is all a bit of a blur. We were two hours from home just trying to make the next right decision for Anderson. Two surgeries, lots of days on and off oxygen, a successful heart med combo, scary ups and downs, two failed carseat tests, and a car-bed later, we were home free.
Anderson was discharged from the NICU in March, and we were able to hold off his six hour open heart surgery until September! Handing him over for surgery definitely was not easier the third time around. The best text I think I have ever received was the one that said heart surgery was complete, Anderson was stable and headed to the CICU. In true “keeping us on our toes” fashion, he had a few minor hiccups in recovery that kept him inpatient for 12 days, thankfully nothing serious.
With heart surgery behind us, we found our routine of a new normal between all the doctors appointments (trust me there are a lot) and therapy visits. Because of the stroke that affects his left side (that we were told he would never be able to move), and the low tone that Down Syndrome brings, Anderson works hard for everything he achieves.
Home with a medically fragile baby during a pandemic is just as stressful as it sounds.. So much so that I texted one of Anderson’s primary nurses from the NICU the night we got home “lol, are we sure we are qualified for this?” We knew our new life was going to look so different than what we had planned. What we didn’t know was that this unplanned journey as part of “The Lucky Few” was about to be better than any journey we could have planned for ourselves. That this journey that started out with so much fear would bring such an incredible amount of joy. I can’t wait for him to keep showing the world that different doesn’t mean bad.