Mended with Gold - Noah’s Diagnosis

I don’t know if it’s been something I’ve intentionally avoided writing about, but here goes nothing. Every time I read about somebody else’s diagnosis story I feel the same painful emotions. The deep pangs of empathy and the flooding of immediate grief, subsequently followed by happiness. Talk about mixing your uppers and downers. It’s a really tough place to sit. Holding two things in your heart that can both be true however opposite they may seem.

In 2020 we got pregnant with Noah. Well, let me back that up. In 2020 we got pregnant and had a miscarriage. I remember by brother-in-law coming to visit the same day and asking how the “vet check” was. What would have normally been a hilarious comment sent me into tears. Flash forward a whopping one month and we got pregnant with Noah. I gave Josh the pregnancy test as a last minute Christmas gift in front of his whole family. Bold move considering I found out that morning. After having the miscarriage, I realised pregnancy should be celebrated no matter how fleeting it may be.

My pregnancy was normal for the first 20 weeks with Noah. I had all the classic symptoms and revelled in them since I had had none with the miscarriage. That lasted 2 weeks. The next 14 weeks I hated all the symptoms. I loved our OB and I loved getting to see our little bean on the ultrasound. I remember going in for my 20 week ultrasound and the nurse practitioner said they found an Echogenic Intracardiac Focus (EIF) on the heart. She mentioned this could be a marker for Down Syndrome. Insert emotional spiral. I remember calling my doctor immediately and asking him about this. He calmed me down and assured me that he had never had a Down Syndrome diagnosis with only one marker. I remember feeling immediately relieved that we weren’t having a child with Down Syndrome.

Flash forward to 34 weeks. I had a follow up with maternal fetal medicine (because I am old) and they said it looked like the baby was having Intrauterine Growth Restriction (IUGR). The sepcialist seemed concerned but not worried. I reached out to my sister who is a nurse and she reassured me it was nothing to worry about. The doctor wanted me to come back for two scans a week until my due date or until he found a reason I needed to be induced. Well, at 37 weeks he found a reason for me to be induced, my amniotic fluid was low and decreasing quickly. He told me it would be best to get induced that day. My appointment was before work and I stupidly asked if I could go back to work for the day and start the induction that evening. I don’t know why I asked, maybe I felt like I needed more time to process. We were going to meet our BABY!

The induction went normal enough, painful and uncomfortable. I remember thinking I didn’t want to get induced, but at least I’ll still get to have a vaginal birth. During contractions baby’s heart rate started to decel. My midwife was very calm and told she was going to put a monitor on baby’s head. The decel continued to happen. I was starting to panic and get worried about the baby. My midwife said, “if this happens one more time we’re going to go to the operating room.” As soon as the last word left her lips, decel. I was devastated and panicked for the health of Noah. They brought me a consent for to sign. I don’t know if my signature would hold up in court, I’m sure it looks like chicken scratch. They wheeled me off to the operating room and Josh was left in the delivery room by himself. I remember being so scared for myself and for Noah. I don’t know if any of you have ever had a C-section, but if you have and it’s an emergency, they can get that baby out pretty darn fast. Also, good luck pooping or laughing for the next 8 weeks. Next thing I know, Josh is pronouncing it’s a boy. Meanwhile I haven’t seen Noah and I keep asking, “does he look normal,” over and over. Everyone was like, yeah lady, as normal as a newborn can look. Someone mentioned how long his fingernails were. I thought I was gonna puke. There were tears. Nobody said anything about what Noah looked like, no one mentioned Down Syndrome at all. Everyone was excited and said that his Apgar score was very normal.

We were recovering in the hospital the next day and a nurse came in to check on Noah. She was a little worried about his tone, but said because he came at 37 weeks it was most likely normal since boys don’t do as well with early delivery. Nothing to worry about. The pediatrician came in assessed Noah, said he looks great. Nothing to worry about. Looking back at pictures from that day, I’m flabbergasted, Noah clearly has Down Syndrome. Denial ain’t just a river in Egypt. It’s laughable now but at the time none of us could see it. They moved us to maternity for further monitoring since I had a C-section. The third night we were in the hospital, Noah’s temperature kept dropping and he continued to get jaundiced. It was dropping so much and so low that they decided he needed to go to the NICU for more intensive care. It was at that point, I remember a pediatrician coming in and saying, “there are some markers with Noah, so we should be considering Down Syndrome.” He didn’t say, “I’m sorry,” which I’m very thankful for now.

We went to the NICU that night and the doctor working said the same thing, we needed to start thinking about Down Syndrome. He pointed out some markers that he was seeing in Noah and told us that a new doctor would be coming in tomorrow. The new doctor came in and looked at Noah. He went through all of the markers of Down Syndrome and said he didn’t think Noah had Down Syndrome. He thought he maybe had some mild muscular dystrophy disorder, but it could be taken care of with some physical therapy. They then started a series of tests because he could not keep his oxygen or his temperature up and continued to get jaundiced. The next day they did an EKG and thankfully he didn’t have anything wrong with his heart. Shout out to all the families that navigated Down Syndrome and a heart condition. They drew blood for genetic tests. The doctor (same guy, second doctor in NICU) said that he would be very surprised if the test came back positive for Down Syndrome. In nine days, Josh and I left the NICU once to get a lunch with my parents. Every night going to sleep on a tiny couch (Josh on a sleeping pad on the floor) in Noah’s NICU room, I remember praying, “God please don’t let him have Down Syndrome, I can’t handle it. That wasn’t our plan.”   I would pray that over and over with tears streaming down my face until I fell asleep.

I looked at Noah’s eyes at one point during the stay and saw his Brushfield Spots. I remember knowing then that he had Down Syndrome. However, I was definitely still in denial. At the end of nine days, he ended up being able to keep his oxygen high enough in his car seat for us to be discharged. My parents were with us at this time and were bringing us food and coffees, being super supportive. We still hadn’t gotten the results back about his blood test yet. They said they would send them to our pediatrician and he would call us.

Two weeks after we got home our pediatrician called and said that the blood test were in and that we needed to come in and chat. I felt really bad for our pediatrician having to give us this news. The poor man was not involved in any of the testing or the delivery. He was very gracious about it and got to the point. He said, “Noah tested positive for trisomy 21, Down Syndrome. I’ll give you guys as long as you need to process the information but we should schedule some follow up appointments.” He left the room and I remember breaking down. I don’t remember if Josh cried. My world got very small and very black. We came home and laid on the bed for about two hours? Crying? I don’t know.  Then Josh turned and looked at me and said, get up, let’s go camping. We packed everything up and headed up the North Fork of the Flathead river. Out of cell range.

Before we left I remember calling our family and telling them. My stepmom saying, “wow, I really wasn’t expecting that.”  I can still hear the inflections and sadness in her voice. I can not explain the range of emotions we went through. Sadness, anger, despair, a desire to quit living, indignation, confusion, embarrassment, vulnerability, self-consciousness, entering depression, crying every day for weeks, grief. Grief. Grief. I remember feeling out of my body. Like I was watching a movie of someone else’s life playing out.  The rug had been pulled out from under us and we were broken into a million little pieces. What I didn’t know then is that we’d mend ourselves together with gold.

Questions upon questions scrolled across my brain like an announcement banner. What do we do next? Will he get married? Will he drive a car? Will he talk? Will he have friends? How do I parent this child? Will he ride a bike? Did I do something wrong? How could this happen to US? Why? I mean endless.

I went in for my 6 week check up with OB and my C-section was infected. Classic. The doctor asked me how I was doing. Crying was my response. She said, “I think we should try a low level antidepressant.”  Enter post partum depression. Cherry on top of a s**t sundae.

The next weeks and months seemed to drag on in a weird haze. I feel awful, but I couldn’t even enjoy being a mother during this time. I was furious at everyone who had told us to have a kid. “Having kids is so fun!” Lies. Everyone was trying to find a new footing, figuring out what to say. Everyone grieving the child, nephew, grandson they thought they were going to have.  I know people were very worried about me and about our family as a whole.

Noah and I went out to lunch one day with a friend and this older woman looked at him and said, “Well, you have an angel right there.”  I was screaming on the inside. Liiiiiike you mean all kids are angels or only kids with Down Syndrome? Are you not confident enough to just say, “Hey, I see your son has Down Syndrome.” I felt like people were staring at us and talking about us behind our backs, feeling sorry for us. A feeling I hate. I forgive her now. I know people are awkward and don’t know what to say, so they say anything to make themselves feel better.

Josh and I probably weren’t the most politically correct in handling Noah’s diagnosis. We mostly resorted to humour. We ran into our midwife while out for pizza one night and she asked how Noah was doing. Josh said, “he’s doing great, except you let him catch Down Syndrome on the way out.” At first she didn’t know how to respond but we all laughed together. Anytime someone would ask if we wanted to do something, we responded with, “well, Noah’s down to hang.” I’m sure there are a million ways people have coped with diagnoses.

Looking at our lives now I often think about a Japanese technique called Kintsugi. It’s the process of repairing broken ceramics with lacquer and gold, leaving a gold seam where the cracks were. Kintsugi highlights the repair instead of hiding the damage. The beauty lies in the story created by imperfections. Something repaired is more authentic and real, relatable. After Kintsugi repair, the object is more resilient. I think of our lives as a broken and then repaired ceramic pot. We have broken but we are glued back together with gold.

Three years later we are in a much better place emotionally. We still have hard emotions come up but one look at Noah’s smile and most of them fade away. Having Noah changed us for the better. It has broken us but made us whole at the same time. His diagnosis has shown us the value and importance of celebrating life. It’s taught us stop valuing ableism as much as we did.  We have stopped letting the world tell us how to live. It’s taught us to be accepting and open, loving and more understanding. It’s reorganized our priorities and values. Noah’s diagnosis has brought us new friends and connections that are deep and meaningful. He doesn’t even know the impact he’s having on everyone around him. I hope someday he knows how truly special he is and how much joy(for lack of a better word) he brings everyone he meets. He affects people. He’s powerful beyond measure and he’s unique. At the end of the day, he may have Down Syndrome, but he is 100% boy. He may have Down Syndrome but he is still worthy of love and celebration.

“The world breaks everyone and afterward many are strong at the broken places.”

-Ernest Hemingway