‘Is this the last time I can kiss him?’ I’d just learned my baby had Down syndrome. Now, he was blue, floppy, and not breathing.’: Mom says baby with Down syndrome, heart defects has taught her to ‘focus on the positive things in life’

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“The story of Noah has many layers. Sometimes is too much for people to take in, so I break it down for them. It is not something you hear every day, and definitely not something that was expected.

My pregnancy was pretty easy. I remember telling myself, ‘Quick appointments mean everything is good with the baby.’ My first pregnancy was just like Noah’s, no complications, no additional ultrasounds, things went as they should be. For our 20 week ultrasound, I was very nervous. I remember my hand sweating right before the appointment, I just wanted everything to be okay. After spending an hour checking every bit of Noah, we were relieved when both the technician and the doctor told us Noah was healthy and nothing stood out to them.

Courtesy of Natalia Weekes

From that moment on, our focus was on enjoying the last days as a family of three and having everything ready for Noah’s arrival. When Noah was born, we were elated! He was so perfect and he came so fast, 40 minutes from walking into the hospital to having him in my arms. The morning we were supposed to be discharged, the nurses told us his O2 saturation levels were low and he had failed a routine test, and before we knew it, we weren’t going home anymore. He was being transferred to the children’s hospital for further examination.

Courtesy of Natalia Weekes
Courtesy of Natalia Weekes

Seeing our newborn attached to wires and inside of an isolette was traumatic. Just hours before, we were dreaming of cuddling Noah at home. Immediately after arriving, the cardiologist and other doctors were surrounding Noah. The cardiologist looked at us and said, ‘Your son was born with a heart defect and he will need surgery. I’m sorry.’ I felt my legs going numb as I held on to my husband. She quickly drew a picture of a normal heart and Noah’s heart, explaining to us that Noah’s diagnosis was called TAPVR. We were shattered.

Courtesy of Natalia Weekes

Why didn’t I know this? Why were there no signs of his condition? Why was my pregnancy so normal? Right after, the geneticists stopped by to tell us everything looked great with Noah, but just in case they would run a blood test to see if there was anything else that could come up. A couple of days after, we received a call stating his results were in from the blood. My husband told me to tell her to share the results over the phone as we didn’t think there was anything else going on. ‘Noah’s results came back positive for Trisomy 21-Down syndrome. I am very sorry.’

At that moment, my husband was feeding Noah and I was pumping. We both looked at each other in disbelief and we began crying. We left Noah’s room hugging each other, crying, while all the nurses looked at us not knowing what to say. We went to the hospital chapel and cried desperately, thinking of how our lives were going to change, and how every plan we had made for our family was destroyed. I kept thinking, ‘Why? Why me? This only happens to other people but not to us.’

As the days passed and we let the news of Down’s syndrome simmer down, we gathered our family and we said, ‘Two days ago, Noah was diagnosed with Down syndrome and although it wasn’t expected, we will love him as long as we live.’ There were a lot of tears that night, but my husband and I were in such good spirits, we felt so calm. We were the ones giving out hugs, and telling our family everything would be just fine with him. He was one of us and we would live life as we had intended to.

Courtesy of Natalia Weekes

Meanwhile, Noah was still working hard to leave the NICU. It seemed like we would take two steps forward and one step back. We were so eager to leave the hospital, but we understood his heart was working so hard for him to be stable enough to go home. 12 days after arriving, we left the NICU with a date for his open heart surgery (August 21).

The days spent at home after leaving the NICU were magical. No more IV’s, no more beeping sounds, no machines. It was just Noah and I. We finally were able to bond, we would watch the sunrise together while everyone else slept. I carried him on my wrap every chance I could. I would stare at those beautiful almond-shaped eyes, I felt so at peace. Everything was so cherished with him, I was so tired but I was on newborn bliss.

Courtesy of Natalia Weekes
Courtesy of Natalia Weekes

The morning of my 6-week postpartum appointment, we decided I would take Noah and my husband would take my other son. Noah was crying before we left. I had fed him, changed him, and cuddled him, but he was still fussy. I put him in his car seat and hoped he would fall asleep while in the car as he usually does. Five minutes into our drive, he began crying again but then stopped. I found it odd because it was a cry I hadn’t heard before. I told myself I would check on him once I got to the gas station (10 minutes away from where we were) but the light turned red, so I got out of the car and I open his door only to find him blue in the face and unresponsive.

I immediately took him out of the car seat and began screaming in the middle of the road for someone to call 911. People were looking at me confused and all surrounded Noah and I. I was on the pavement on my knees in the middle of the road holding my floppy baby who wasn’t breathing. I kept thinking to myself, ‘God this can’t be it, please don’t take my baby away. Please.’ I tried giving him mouth to mouth while I screamed his name for him to wake up. A girl came over and tried performing CPR to the best of her ability. By the time the ambulance arrived, Noah was going in and out of consciousness.

When we got into the ambulance, he was stable. But I was not. I kept screaming on our way to the hospital, ‘I almost lost him. He stopped breathing. He was blue! What happened?’ I couldn’t answer the questions the paramedics were asking me. ‘What is his full name? What is your insurance?’ I kept holding my baby while I tried processing what had unfolded. That day was a blur. Doctors weren’t sure at first if it was related to his heart, but after an echocardiogram, they realized they needed to operate on him the next day.

Sending my child to the operating room was excruciating. There’s really no other way to describe it. We spent the time while the surgeons operated on him doing two things: praying and crying. Seeing my baby post surgery attached to so many tubes was not normal, not natural. I loved the times when nurses would put a blanket over his tubes because he looked like he was supposed to, how he was meant to look.

Courtesy of Natalia Weekes

Two days after his surgery, doctors told us his levels weren’t perfect, not how they expect them to look after a surgery that was supposed to correct the issue. Turns out as carefully as the surgeon was, there were two veins left out and they needed to operate on him again. After the surgeon left, I couldn’t walk. I couldn’t talk. My husband asked me to pray with him before we sent Noah out to the operating room again, and I couldn’t. My faith was tested and I wondered why a one month old would go through another open heart surgery, again.

‘Is this the last time I see him? Will this be the last time I kiss my child?’ I wondered. I ended up developing a rash all over my body that day, my body could not take any more surprises. As I was pushed to the very end of my limit, it was exactly what Noah needed to be healthy. After the surgery, Noah’s heart was perfect. One thing after another kept getting removed until I could put clothes on him, hold him, and finally breastfeed him.

Courtesy of Natalia Weekes

After two weeks in the hospital, we headed home for good.

Courtesy of Natalia Weekes

Since then, two months have passed and our life has been filled with immense happiness.

Courtesy of Natalia Weekes

The day before we were planning to capture our family of four in a photo shoot, I decided to include a ‘Welcome to Holland’ banner, a tribute to Emily Perl Kingsley‘s poem that beautifully explains finding out your child being born with special needs. I read the poem a day after we learned of Noah’s diagnosis of Down syndrome and it moved me in a way I could not describe. We wanted to celebrate Noah through the photo shoot. To scream through the pictures how happy we are, and that he is meant to be here. He worked so hard to be here. I wanted everyone to see how much our lives have changed for the better. How we see the world with a new set of eyes, with an eternally grateful mind.

Courtesy of Natalia Weekes
Courtesy of Natalia Weekes

Small things no longer bother us such as being stuck in traffic, food being spilled, and days not going as planned; everything seems so minimal since having Noah. We have learned to focus on the positive and to see the positive in every situation. I’m not sure we would be who we are now if Noah was not here. If it’s true what they say that you can change the world one person at a time, then Noah is already a world changer.”

Courtesy of Natalia Weekes
Courtesy of Natalia Weekes

This story was submitted to Love What Matters by Natalia Weekes of Bristow, Virginia. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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