The 1 in 4: Sweet Baby James

When my wife, Betty, was pregnant with our third child back in 2014, she started carrying extra amniotic fluid at about 22 weeks. By 32 weeks, she looked like she was 40 weeks pregnant. Everyone asked her if she was carrying twins, but in reality, something was wrong.

The baby had what’s called Duodenal Atresia, which is where the stomach is not connected to the intestines. For those of you who don’t know, the baby basically produces the amniotic fluid, then drinks it, and it gets recycled back into amniotic fluid. But because the stomach and intestines weren’t connected, the baby couldn’t process the fluid, so Betty’s belly just kept filling up with more.

This was not considered a life-threatening issue, but it did make it a High Risk pregnancy, and we had several visits with Maternal Fetal. We also decided to have the MaterniT21 test done, which tests for things such as Downs Syndrome, as Duodenal Atresia is a symptom of Downs. We just wanted to be prepared.

But nothing could prepare us for the worst.

My beautiful baby boy, James Richard Tanory, was born into Heaven on Wednesday, June 4, 2014, at 34.5 weeks.

I held him in my arms almost six hours after we discovered that his heart was no longer beating. We discovered it while looking at his lifeless body on the ultrasound monitor at Maternal Fetal. Seeing and hearing the heart beat have been my two favorite things when accompanying Betty to ultrasounds and doctor visits for all four of my children. "It never gets old," as I like to say, and I saw right away that my baby's heart wasn't beating. It was an awful, terrifying moment that I will never forget. James' heart wasn't beating, but mine was. I could feel my heart throbbing throughout my entire body and up into my throat. I knew something was wrong.

When the ultrasound technician excused herself halfway through the process to get the doctor, Betty and I feared for the worst. Betty said she hadn't seen the baby move. I told her I hadn't seen the heart beat. We were both very scared. I told her everything would be OK. But of course it wasn’t.

When our doctor told us that he had bad news - that the baby's heart was no longer beating - Betty cried. I held her in disbelief. I naively thought that it would be all right, that we could get his heart beating again, that we would do an emergency C-section and then breathe life into him or that by some miracle my baby would be OK. I was in disbelief that just the week before we could see the baby hiccupping on the ultrasound, and now my baby was not moving.

We were asked if we wanted to deliver the baby that day, or wait a few days. We decided to deliver. We wanted to hold our sweet baby in our arms as quickly as possible.

Betty asked if it was a boy or a girl. We didn't know. Throughout all of the ultrasounds, throughout receiving the MaterniT21 test, throughout meeting with our doctors, the ultrasound technicians, the nurses and the pediatric surgeon, we had managed to keep the gender a secret. But now Betty wanted to know.

It was a boy. It was my son.

We had a name picked out: James Richard Tanory. He was named after two of our favorite people - our fathers. James, after Betty's dad, Jimmy. And Richard, after my dad. Or as my oldest daughter Annie explains it, "James after Pops, Richard after Papa, and Tanory after us."

James was born into total silence at 2:30 p.m. on June 4, 2014. Our doctor placed him into Betty's arms right after his birth. She and I both looked at him for several minutes before the nurses cleaned him up. He was perfect. He was so beautiful.

I could go on and on in gory detail about how awful it is to lose a child, but unfortunately, many of you already know. And if you are reading this in support of someone else but have never experienced it yourself, then there's simply no words to explain it. I could tell you about grief and despair, and about being on the verge of crying at every instance, or wanting to hit something. I could tell you about my prayers to God that he could take me instead of my son. I could tell you about how no man should have to pick out a casket for his child. I could tell you about sitting in a rocking chair in his room, humming Sweet Baby James to myself. I could go on, and on, and on.

Instead, I will tell you about love.

We experienced an outpouring of love from our friends and families, and even people we didn't know, in ways that it’s still hard for me to wrap my head around. For example, after the nurses bathed James, he was clothed in a beautiful blue gown with hand-switched crosses courtesy of Threads of Love. Afterward, a photographer from the Now I Lay Me Down To Sleep Foundation donated her time and effort to take pictures of our baby boy. The priests of St. George helped us plan a funeral and gave us a final resting place for James. And whether it was through food calendars, or bringing toys to occupy our two older children, or getting flowers for James’ funeral service, it was done by our friends, no questions asked. I’ve learned a lot about how to be a good friend.

I don't know what we would do without Betty's parents. They have helped us with everything. Her mother even came with me to the funeral home - you can't get much more moral support than that. My parents kept our older kids safe and sound while we dealt with the loss of our baby, all while trying to cope with the loss of their grandchild. I’m sure that wasn’t easy.

To my beautiful wife, Betty: thank you. You've always shown me love and patience. You've always been the greatest mommy. You've been so strong throughout all of this, and you amaze me every day. I love you more than you could ever imagine.

Speaking of love, I have one more person to thank.

Thank you to my sweet baby James. I'm sorry, James. I'm sorry that I could not do more for you.

As difficult as it was to lose a child, it was also upsetting when I realized that the world was continuing to spin regardless of what was going on in our lives.

The worst was when people close to us had decided that it was time for us to move on… only months after the death of my son. The words, “You just need to get over it,” were thrown around. People that I thought understood what I was going through, apparently didn’t. Needless to say, some of those relationships have changed, and the wounds still haven’t completely healed.

A year after James died, my wife and I were both emotionally ready to try again. I’ll be honest, we were scared. We knew that the same result could happen again. But we just felt like we had more love to give. My wife became pregnant with our fourth child, a girl that we named Rosie. And because we had already lost a child through stillbirth, we were considered a High Risk pregnancy, which meant frequent trips back to Maternal Fetal.

Going back to Maternal Fetal, to the place where we discovered our son had died, was pretty tough. But we were a High Risk pregnancy, so we had to do it. And we’re glad we did. You see, everything with the pregnancy was going well for so long, but we knew better than to let our guard down.

At 22 weeks, the ultrasound looked great. Betty, as always, was taking great care of herself and the baby. At 24 weeks, still good. 26, great. But at 28 weeks, I asked the ultrasound technician to look at the stomach and small intestine, as I always asked. And this time, something looked wrong.

The duodenum – or top part of the small intestine – was still visible, but it appeared to be thinner than the other parts of the small intestine. At 30 weeks it was even narrower. By 32 weeks, we were looking at what we thought was another instance of Duodenal Atresia – the very same thing that our son James had, which we suspected was the cause of his death. We thought, “How could this happen again?”

We made a tough choice, but one that I think was the right one. At 33 weeks, 7 weeks premature, we decided to induce labor. We just couldn’t wait any longer. We knew what was at stake.

I’m happy to say that our daughter, Rose Elizabeth Tanory, was born on February 24, 2016, weighing in at only 4 pounds. A day later, she had surgery to correct a Duodenal Atresia. Only our doctor told us that it ended up not being Duodenal Atresia – it was instead an Annular Pancreas. That’s where the pancreas, instead of folding up on itself as it grows inside the baby’s body, wraps around the small intestine. It basically starts to throttle it and choke it, until nothing can pass through. What we had been seeing on the ultrasounds were weeks of the pancreas slowly growing around the small intestine and obstructing the view of it, making it look like it was Duodenal Atresia. Thankfully, the surgery to fix both issues is the very same surgery.

I like to say that James was looking out for his little sister.

Now, I look back and ask, what would our lives look like if James were here? What would our lives look like without Rosie in it? How can I choose between my kids? I can’t.

We’re always told that God has a plan. I’ve thought many times, “If God has a plan, why is my child dying part of it?” The truth is that we don’t know. But I will tell you, in all honesty, that I do believe that James is looking down on us, helping us, and keeping an eye on his baby sister.

It’s said that when someone dies, that they’ve been lost, as in “I lost my son James.” But that’s not true. James isn’t lost. Our children aren’t lost. We know right where they are: in Heaven. Hopefully one day, we’ll be there, too.

Bobby and Betty Tanory are the captains of the “Sweet Baby James” team for Anna’s Grace Quarter Marathon – representing the 1 in 4 pregnancies that ends in loss. You can visit their team page or make a donation here: https://www.crowdrise.com/sweet-baby-james

About Anna’s Grace Foundation Anna’s Grace Foundation is a registered 501(c)(3) nonprofit organization supporting families in the Greater Baton Rouge Area who experience miscarriage, stillbirth, or infant loss. Each and every day one of our neighbors, friends, coworkers, or family members will experience the devastating loss of a baby, and Anna’s Grace is there to provide emotional and financial support so that families can focus on healing. The Anna’s Grace Quarter Marathon is on March 26, 2017. For more information or to register, visit http://www.annasgrace.org/registration.

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