Noah’s Story

“On February 1st 2014 – Noah turned TWELVE YEARS OLD……..”

Noah Stoffel, Mosaic Trisomy 16, 2/1/2001, Bremerton, WA

Noah Stoffel T16mos 11y.o.Our story started after I had my oldest son.  He had been a twin, I lost the twin early on and I wanted another child right away so he had someone close in age.  Things didn’t work out like I hoped.  5 years and 4 (more) miscarriages later …  and I finally got pregnant with a baby that stuck. 

It was very clear, early on, that even though this baby was growing and the pregnancy was continuing – that something was wrong.  Every ultrasound that we got, the due date got pushed further away based on size, so the baby was not growing well at all.

Based on this, and the triple screen blood test (AFP) coming back with a double positive for Spina Bifida and Downs.   A 1:165 chance for Downs Syndrome and a 1:98 chance for Spina Bifida – how it could come back with both, I don’t know, but it did. It was immediately suggested that we get an amnio, so we did. It came back and the doctor pulled us into room and he began by saying it wasn’t Downs or SB .. but something much rarer called Trisomy 16 Mosaic. Everything fell on deaf ears from that point on, other than “Oh, by the way, it’s a boy.”

He had a name from that point on. Noah Alexander, we wanted him to have a strong name. We were sent to genetics team, and was told there was no hope. “The fetus will die in utero … if it does make it, it will die shortly after, and if by some MIRACLE it makes it, it will be so mentally and physically delayed, it won’t be worth it.” Meanwhile, Noah was thrashing around inside me … saying, “hey I’m here, don’t listen to them” …. and then the DR said the worst thing. He said “I highly suggest that you interrupt the pregnancy.” And I thought – I’m only 19 weeks, he wouldn’t make it……….. and then it dawned on me, he was suggesting that I kill the baby I fought so hard for. I told him, “that’s not an option.”

It may have been selfish on my part, but I wanted to have him alive, I wanted to be able to hold him ALIVE if that’s all I was going to be given with him, time wise. I just needed to hold him once… breathing. Over all – I wanted to give him a chance, what would happen if the doctors were wrong? What happened if I killed my child, and he wouldn’t be all these things the DRs said – what if he was more like that handful of cases I had read about? Plus, I wouldn’t be able to do it.

So we went through our pregnancy, and at 33 weeks I developed Eclampsia. Noah was having heart deceleration, and a lot more was going on against us. I was transferred to a hospital with a better NICU and once there it was determined that the placenta was failing. It was small, abnormal and poorly functioning. We later found out that it was 100% Trisomy 16. But it was time to get this baby out.

I had an emergency c-section and the room was completely silent. There was NOTHING. Then all of a sudden, they started saying “3:45” … they kept repeating it. I finally asked – and was told it was the time my baby had been born. I hadn’t gotten to see him, there was no announcement … no “It’s a boy” nothing… just silence. They whisked him away into another room – to die. That’s what they had been told would happen. I wasn’t even given a chance to see him.  This was very traumatizing or me.

He was born 1lb 12oz and 13 3/4 inches long ….

I found out years later – all the staff had been told by the Genetics team – that he would die and not to give us any hope. That there was no question he would be gone by 48 hours old.

But they were wrong.

At 40 hours old, about, he was taken off the breathing tube because he was doing it all on his own. Breathing all on his own. No assistance. This 1lb 12oz child was breathing completely on his own.

48 hours passed, and he was thriving.

At 3 days old, I begged to start doing Kangaroo Care and was allowed.

Shortly after, he was labeled as a “Feeder Grower” meaning they were just waiting or him to learn to eat and gain some weight and he could go home.

He came home the day after his St. Patrick’s Day due date. He was only 3lb 10oz when he came home, but he came home.

Things haven’t been easy with him, there have been countless medical tests, several surgeries, he does have developmental delays… but if you were just meeting Noah, you wouldn’t know a thing was wrong with him until I told you or pointed stuff out. He is an amazing kid who has beaten all the odds he was given.

He is my miracle and I call him “the boy who lived.” …

On February 1st 2014 – Noah turned TWELVE YEARS OLD……..

That’s our story ….

I thought it would be wise to list all the things we deal with – with Noah.  Both past and currently….

Medical Issues we have dealt with that may not be a big concern at the moment: severe asymmetrical IUGR, low fluid, small poorly functioning placenta, heart decelerations, bilirubin in amniotic fluid, Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious (fixed surgically at 1 year), Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)… Brain scan at one point showed some fluid on his brain that was later declared a “variation of normal”, umbilical & double groin hernias (fixed surgically at 6 months), C-DIFF bacterial infection from antibiotics and started to go into Kidney Failure, Broken Nose, Gastro issues (vomiting same time every day for years) ….    He has had surgeries to repair his hypospadious, hernias, and to put in ear tubes, also dental surgery… and he has been put in the hospital/put under for countless tests.

Medical Issues we will always be dealing with and are currently dealing with: Mosaic Trisomy 16, Glomerulonephritis & Hematuria (both kidney issues), Hearing Loss (in his left ear, he has a hearing aid).  Fine Motor Delay, Mixed Receptive-Expressive Language Disorder, Dyslexia & Dysgraphia.  oral sensitivity issues (taste & texture)… sound sensitively issues… speech delays….low muscle tone, tone issues from his hips to his toes & Supinated feet, Sensory Processing Disorder, environmental allergies, braces, skin growths/moles that are being “watched,” he has ongoing Speech, Occupational, and Physical Therapies …. he homeschools due to having a poor immune system and catching everything he’s around, missing more school than being there.

Annissa Yahnke
moonnstarmommy@gmail.com