My story

Hmm, where do you begin with something like this? How do you begin? Even now, nearly 6 years later, my eyes well up as I think about all I've gone through and all I've lost. Losing a child is an experience that changes you forever. There is no forgetting. There is no getting over it. And honestly, you don't want to. From the moment you know you are pregnant that child forever changes your life, their whole life seems to flash before your eyes as you imagine everything they could do and become. And when that is suddenly gone, when in the blink of an eye it all vanishes, it is not something you just 'get over."

My husband and I were blessed to have one healthy child before any of our problems began. We had no clue how lucky we really were or how easily something could go wrong. Oh, we loved our daughter for sure, more than anything, we were just blissfully ignorant about the struggles and devastation that others had to endure.

Our lives forever changed when I was about 19 weeks along with our second child (though we'd had one early miscarriage between the two.) Everything in the pregnancy had gone well, the AFPS, the screenings, everything had been normal and just like you'd want it to be. We had no inclination that anything was wrong and so went to our routine ultrasound halfway through the pregnancy with hopeful hearts and expectant eyes. We even had our three year old with us because she was eager to see if Mommy had a girl or boy in her tummy. All through the ultrasound things looked great, at least to our uneducated eye. The baby, a boy, had two arms and two legs, all the fingers and toes were there, the heart was beating nice and strong and the little guy was just swimming around, kicking and moving like you'd expect a healthy baby to be doing. Everything seemed so great. We are ecstatic to have a son on the way. Derek couldn't have been prouder. What man doesn't want a son to carry on his name?

And then, since little three year old girls are squirmy and impatient, he took her off to go to McDonalds and play while Mommy waited for her regular Dr. visit and the official ultrasound review. Again, never dreaming in our wildest dreams anything was wrong.

I still will never forget the Dr. coming in to the room, the dull fluorescent light beating off the white painted cinder block walls, me sitting on the end of the examine table, swinging my feet back and forth as I felt the baby move inside me, still doing somersaults. I was happy and ready with a smile when the Dr. came in, clipboard in hand. To her credit, she never really let me see the panic she must have been feeling in those moments. Or the dread. After the cursory how are you, how are you feeling today things, she said there were a couple of things that showed up on the ultrasound that were of concern. My smile faded and I felt like I suddenly couldn't breathe. What do you mean 'of concern?'

She went on to point out that the baby's femurs (upper thigh bones) were measuring a little small and there was some sign of fluid in the kidneys. Already I was freaking out, what does that mean?! It meant that there was an increased chance of Downs, though she was quick to reassure me that maybe it wasn't, maybe it was just a fluke since the AFP and other tests had all come back normal, showing low risks of just that. I wasn't over 35, so many of the things you'd be concerned about simply weren't there.

All the while I am doing my best not to cry, to try to stay calm even though my heart was breaking and I wanted to scream. No! This can't be right! This can't be happening! My baby is fine! My son is fine!

They scheduled me to have a fetal scan (really long ultrasound) the next day with a perinatal specialist and meet with a genetic counselor (something you had to do when meeting with the perinatal specialist.) I managed to hold it together until I got outside and opened the car door. I lost it was soon as I did and let out the most heart wrenched cry/sound I've ever uttered in my life. I can't explain it, I just couldn't control it. I started crying hysterically as soon as I got in the car, completely freaking out and panicking my husband who didn't know what just hit him. I tried to explain through my uncontrolled sobs, I couldn't even mask the pain and fear from my daughter in the backseat. It was just too painful. Too unexpected.

We get home and I somehow manage to tell my husband what was said at the Dr.'s office. We are devastated. Everything, the life we'd imagined for our child is changing before our eyes. But through it all, as bad as it was, as unnerving, we somehow managed to console ourselves. Even if it was Downs at least he looked healthy, his heart looked strong, he was moving and active, he had two arms and legs, fingers and toes. If something was wrong, if he had Down's, it would still be ok. We could manage. We'd take our son in whatever form God gave him to us. They were probably wrong because he looked just fine to us and all the earlier tests had been negative, but if he did have Down's, it would be ok. We did a lot of praying and crying that night, but in the end...felt hope. The worst we'd hear the next day was that he had Down's and it would be ok. Everything would be ok.

The next day, scarcely able to breathe, we went for the fetal scan, all along thinking it was some mistake soon to be rectified. The fetal scan was long, and all during the time it was being done and the technician was telling us which bone she was measuring, the flow of the blood, the placenta, all of it...we kept thinking it was all some horrid mistake. Our son looked beautiful and healthy, moving and kicking and squirming, the heart beating so strongly. My husband and I exchanged more than one look, thinking in our hearts it was all fine. He looked great.

Of course the technician was not allowed to tell us anything, other than what she was measuring. And again, to her credit, she never let on anything was wrong and so we were utterly unprepared for the Dr. when he came in (after reviewing the ultrasound images and notes outside) and he picked up the wand and started whizzing it over my rounded belly, saying there were several things of great concern (first shock) and then he uttered that most dreaded of words, one that forever changed my life, "Possibly lethality."

OMG, how was this happening?! What was happening? It was all too fast, too sudden, too shocking. How could this be happening to us, to our precious baby? To a baby we so desperately wanted and loved? To a baby who'd seemed healthy for 19+ weeks?

Naturally, I lost it and started crying amid the Dr.'s apologies for being so abrupt, my husband clinging to my hand as I tried to hold still and let the Dr. point out this bone or that, all things pointing to something majorly wrong. In came the genetic counselors, a room full of virtual strangers all talking and staring at the screens while the wand passed over my shaking belly (I couldn't stop crying.) Apparently what was wrong with our son was so rare, everyone was wanting to see it and talk about it. I felt dizzy and sick. I felt like I couldn't breathe, like the world was collapsing around me.

There was something dreadfully wrong. The baby's upper arm and leg bones were measuring alarmingly short for the gestation. The rib cage was under developed, the heart was already taking out about 50% of the space, and not because the heart was enlarged but because the chest cavity wasn't big enough. There was some concern the heart we'd thought was beating so well and strong had a major problem.

The next few days were a blur, scheduled for more tests, amnio, blood tests, ultrasounds with perinatal cardiologists. More ultrasounds. More fetal scans. More waiting and more dismay and heartbreak.

At the end of it...they thought they'd narrowed it down to one very rare, but usually lethal type of skeletal dysplasia. Asphyxiating Thoracic Dysplasia. Basically, it is characterized by a shortness of the upper arm and leg bones, but most importantly the ribs and chest cavity. There isn't enough room for the lungs to grow to a sufficient size to support life outside the womb. As long as the baby was inside me, he could live and breathe through me, but the moment he'd be born and umbilical cord cut, he'd suffocate and die. It was such a rare disorder there was no genetic test for it. And it is only really confirmed in xrays and/or autopsy. We had the Xray, but they still couldn't say for sure. We had to wait and monitor the bone growth to watch the trends, all the while running the risk of my body realizing something was wrong with the baby and turning against the pregnancy at any moment. Time was against us.

More fetal scans, more tests and it was pretty much decided, the baby had what they thought he had. They said they couldn't tell us what to do, but warned about my body turning against the pregnancy. In the end, it was something the Dr. said that helped up make that fateful choice. He said the baby would never leave the delivery room alive, regardless of when that would be. The longer we waited, the greater the chance I was endangering myself. And in VA, if you get beyond 24 weeks I think it was, they are obligated to try to resuscitate the baby and try to save his life. I couldn't stomach the thought of my precious baby being poked and prodded and everything else while he suffocated or was in pain or discomfort. I couldn't do that.

And so, they induced me. I had to walk into the hospital with a living, breathing, kicking and squirming baby inside me to be induced at 22 weeks. A baby so desperately wanted and loved. A baby I did not want to have to let go of. It was the hardest thing I ever did in my life.

We had the choice to do a D&C or birth him and it wasn't a choice at all for me. He was a living breathing baby, the birthing was the only option my heart would allow. We were told he'd most likely pass during the labor, the stress of it would be too much for him and he'd die. I can't begin to tell you how horrible it is to be hooked up to IVs pumping poison into your veins, medicine that will cause the premature birth and death of a baby you so desperately want. He was moving and kicking inside me. He was so loved and wanted. It was agony.

Around 24 hours later after being induced, Noah Adam Painter was delivered on a quiet October morn in room 13 of a Richmond hospital. He was tiny, only 9.5" long and 14 ounces. He was tiny, but beautiful. He looked just like a little doll. We got to hold him and say good bye, but after he'd already passed. That had happened during the birthing process. We weren't sure exactly when because they didn't want to monitor his heartbeat because they knew it would upset me. I like to think I know when it happened, but that's another story for another time.

We held him in those quiet moments, snuggling our tiny son in our arms, cradling his still body against our hearts, willing him to feel the love we felt, so reluctant to say goodbye. We had a minister from church come and say a prayer with us. Some family members came to see him and hold him too. Eventually, with one last kiss upon his forehead and whispered I love you, I handed him over to the waiting nurse so his remains could be flown to the International Skeletal Dysplasia Registry at Cedars Sinai in California. We were told it was the best institute in the world when it came to studying this sort of thing and we thought that the best way to honor Noah was to try to help others. A few days later, we had a memorial for him at the chapel of our church.


It will be six years ago this October 31st.