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I'm Kate, a photographer of motherhood and all of the love and change that it brings. Photographing your connection with your children brings me such joy, and I am so grateful that this career has chosen me.
Hi there!
The story of my sweet Augie and my motherhood journey starts back in 2016. While looking for a new doctor so he could get a physical, my husband found a large lump in his throat. Within weeks he was diagnosed with thyroid cancer and underwent 2 surgeries and radioactive iodine therapy. We were told that under no circumstances were we allowed to get pregnant until he was cleared.
Once we were in the clear to start trying again, it just didn’t happen for us. After months without getting pregnant, we had a chat about the future. At that point we were in our early 30s and pretty comfortable with how our lives were going. I had an adorable nephew to spoil and we decided that if we were meant to have children, we would, and if we weren’t then we were ok with that.
Fast forward to July of 2020. I started feeling off. I was pretty sure it was from months of working as a nurse in the world of COVID, but I just couldn’t shake it. I woke up at 2 am one morning, sat bolt upright in bed and knew that I was pregnant. My husband figured it was just another false alarm and told me to go back to sleep. I couldn’t shake the thought and took a pregnancy test later that morning.
You can only imagine the absolute shock when after a couple of years with no success, I somehow was pregnant.
At my 12-week appointment, my OB had me do Non-Invasive Prenatal Testing. My husband and I were excited about it because it meant we would find out the baby’s gender way before the 20-week anatomy scan.
I’ll never forget the day. Wednesday September 9, 2020. I was at work (I was working in a chemo infusion clinic as an infusion nurse at the time) and at 8:30 am – with a patient scheduled to arrive at 9:00 am – I got a phone call from my OB. “Kate, this is never the news I want to have to deliver, but we got your NIPT results back and your baby has a 99% chance of having Down syndrome.” I went on autopilot, got some basic information, asked some generic questions, and hung up the phone promising I’d call her back once I had spoken with my husband.
I called my husband, and I don’t remember anything from the conversation except that he asked me “But did you find out if it’s a boy or a girl?”. That one sentence told me everything I needed to hear. This was our baby – and we were in this together.
When I called my OB back, all I asked her the most important question I could come up with. “Is it a boy or a girl?”
“Let’s see… Kate Voda is having….. A boy”. And with that, I fell completely in love with my little, tiny, baby boy.
Waiting for the 20-week anatomy scan and echo was excruciating. Everything I read, heard and was told made me worry. A photographer whose journey I followed very closely had recently been pregnant with a baby who had Down syndrome and had significant complications that resulted in his early delivery at 31 weeks and his passing. You can read her incredibly powerful and emotional story here. All I knew was that that appointment was the make-or-break moment.
We made it through the anatomy scan with flying colors. The echo, not so much. That was where we found out that Augie – who very much had a name at this point – had a complete balanced Atrioventricular septal defect. Essentially, his oxygenated and un-oxygenated blood all mixed together because of holes in the walls of his heart. This meant his body had to work incredibly hard to move enough oxygen around his body. At that appointment, our cardiologist told us we were possibly looking at open heart surgery as soon as a year old, but that this was a very standard open heart surgery and his prognosis was fantastic.
It’s interesting to me now. I was so afraid to tell people that I was pregnant. I think I made it to 24 weeks before I told anyone at work. And even then I kept it hush-hush. Why? That’s a good question. I think because I was still afraid he wouldn’t make it. I didn’t want to have to explain our choice to continue the pregnancy to people, and I didn’t want pity. I wanted people to be excited about him. I kept his diagnosis very closely guarded and only a handful of people knew.
Pregnancy became a waiting game. I was given every statistic – pre-term labor is more common, beyond 39 weeks risk for stillbirth goes through the roof, and on and on and on. I started weekly non-stress tests. I had frequent 3D ultrasounds. I had appointments with my OB, with Maternal Fetal Medicine, with fetal cardiology, genetic counselors.
I was induced at 39 weeks and delivered my sweet little boy. We got to snuggle with him for a blissful 30 minutes before he had to head off to the NICU for more support. The next few weeks became a routine of heading into the NICU, spending time with our peanut, and hoping that today was the day he got to come home.
Eventually, with an NG tube in to help him get enough food, we got to bring our little guy home with us. It quickly became an all-consuming routine of bottle feeding until he got too tired, then switching to the tube feed to finish, letting him rest for a little, and starting all over again – with a slew of medications for his heart needing to be given every few hours.
In the midst of all of this, we moved from California to New Jersey. This move allowed us to be closer to family as well as to Children’s Hospital of Philadelphia where Augie ended up having his open heart surgery at just 4 months old.
Handing him over to the surgical team was one of the hardest things I’ve ever had to do but knowing that he was in the care of one of the best surgical teams in the world made it manageable. We waited 10 hours to get to see our little guy again and then started the recovery process. Poor Augie had some impressive post-op complications – seizures, an acute kidney injury, and a chylothorax, but somehow – miraculously – he made it home from the hospital in the 10 days that we were originally told.
Augie recovered beautifully and has been doing amazing ever since. He has been followed by PT and speech as well as all of the other specialists, but he truly is doing amazing. We have encountered some of the things that are typical for children with Down syndrome – getting sick much more frequently, ear tubes, delayed walking and speech – but none of that holds him back!
He started walking at 26 months old and has been on the go ever since! He isn’t currently using words to communicate, but with a very expressive face and a sign language vocabulary of over 60 words, we have no problem knowing what he’s trying to tell us.
He lights up every room he walks in, he brings a smile to every face he sees, and he makes me laugh at least 100 times a day.
Being part of the Down syndrome community has connected us with organizations and people who have inspired us and brought us so much hope. I am an Athlete Ambassador for the National Down Syndrome Society, and am on the Pledge Committee for Ruby’s Rainbow. In 2023 with the help and support of so many amazing people, we were able to raise enough money for Ruby’s Rainbow that we were able to present a scholarship in Augie’s honor to a young man with Down syndrome who is pursuing a college education.
We frequently get stopped in stores and on the street by people who have a family member with Down syndrome. It’s like being part of a secret society – there’s the knowing smile and the sentence “it’s just the best!” when referring to having someone in their life who has Down syndrome.
While there is still plenty of work to be done, people with Down syndrome are taking the world by storm. María del Mar Galcerán Gadea is the first person with Down syndrome to be elected to the Spanish Parliament. Chris Nikic just became the first person with Down syndrome to complete all 6 World Marathon Majors (after being the first person with Down syndrome to complete an Ironman!). James Martin was the first person with Down syndrome to win an Oscar. People with Down syndrome are owning businesses, going to college, modeling, acting, singing, playing collegiate sports, living independently and blazing a trail for the next generation.
All of the unknowns, all of the fears, all of the worry – it is all worth it and I would do it all again in a heartbeat for Augie. To get to be the mama to this sweet, kind, hilarious, spunky, creative, intelligent, hardworking, determined, brave, incredible little boy – it’s the best gift I could have ever been given.
I will say this for the rest of my life. I wouldn’t change my son for the world – but I would change the world for my son.
If you are a parent of a child with a disability or have had a NICU stay, my doors are always open for you. Please know that you and your entire family are welcome and celebrated at Kate Voda Photography. Read more here.
Do you know a family who has had a difficult journey and could use a family photo session? Please nominate them here! Each quarter I select one deserving family to receive a Signature Portrait Session at no cost to them.
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