JANE JACKSON Expecting life.

Patience is a mother's first virtue.

AGE   42

HOMETOWN(S)   Charlottesville, VA, and in a past life, NYC

NUMBER OF CHILDREN   Two

DAY JOB   Part-time, work from home, technology officer for Drystone LLC

RELATIONSHIP STATUS   Happily married

HOW DO YOU COMBINE WORK AND FAMILY?

I find keeping home, kids, work and marriage running smoothly an unquestionable challenge.  Something always needs my attention: a work project, a babysitter to call, cupcakes for a school party, errands, piles of laundry, and so on.  At times, I feel like a pie cut into too many pieces.  While working from home and having a flexible schedule is amazing, I am responsible for organizing my space and managing my time.  It is incredibly easy to be distracted by a large mess, chore or home-related project while I’m trying to concentrate at my computer.

Recently, I’ve tried to let go of the small stuff.  Sometimes those cupcakes aren’t super-cute and homemade.  They are (gasp!) from the grocery store bakery.  Sometimes (more often than I like to admit) laundry never makes it back into drawers and closets.  We just dress directly from the “clean” laundry basket.   Prioritizing is my friend. At the end of the day, I just try to do the most important stuff.   Sometimes, that’s an urgent work task.  Other times, it’s a home project or chore. Often, it’s a chance to play with my kids.

Those chances don’t hang around forever*.

 

*EDITOR’S NOTE*   That’s not just a casual observation by Jane: she learned—the hard way—to not take her children for granted.

Jane’s oldest child was born with congenital diaphragmatic hernia, or CDH.  Following is the story of her son’s uncertain beginning in life, and his happy present.

This essay originally appeared in the Spring, 2007 issue of The MotherHood Magazine. It has been updated and reprinted here with permission by the author.

 

Expecting Life

After a grueling two-hour ultrasound, the doctor turned to us and said, “This doesn’t look right. I may be wrong, but I think it’s a diaphragmatic hernia.” Already exhausted and sick from the exam, I now felt incomprehension and dread. My heart beat as if it were trying to escape from my chest. I was stunned, full of questions and, above all, afraid.

Pregnancy is an anxious time. Seemingly endless tests and screenings remind us that there are no guarantees. Web sites, books, friends, even strangers, dispense prenatal advice. The media reports frightening accounts of hidden environmental dangers. Despite all this scary information, most of us never imagine the worst—that our babies will die— but it happens.

I certainly had not thought about infant mortality on that beautiful fall day. The previous year—which included 9/11, a miscarriage and my husband’s skin cancer—was tough. In the great cosmic scheme I was due for some good news and I knew with unshakable confidence I would get it. I was wrong. Our son’s intestines were not in his abdomen, but in his chest. His heart was growing on the right side, not the left and his stomach was elongated. The doctor was fairly sure it was a diaphragmatic hernia, but wanted us to undergo more tests.

The next days were a blur as the doctor rushed to introduce us to a genetic counselor, pediatric cardiologist and other specialists. The genetic counselor provided us 10-year-old articles that, at their most optimistic, depicted grim outcomes. In the hospital’s cardiology department, I passed several children hooked up to machines looking sad and bored. The fetal echocardiogram showed no functional issues with the heart, it was just in the wrong place. This, I thought, must be good news. No, the cardiologist informed me. It just reduced the likelihood of chromosomal abnormalities. He went on to say that if my son lived, he could be very, very sick. Both the cardiologist and the genetic counselor urged us to consider terminating the pregnancy.

But I still had many questions: How sick are the survivors? Are they cognitively delayed? What happens at birth? How many survive? Would my son be like the children I had seen in the cardiology area? What could I do to help him? Suffocating from pressure and confusion, I kept putting my hand on my belly. I didn’t know what else to do.

While I saw doctors and tried not to cry, my husband contacted two good friends, a pediatrician and a neonatal intensive care unit (NICU) nurse. With their help, we learned that congenital diaphragmatic hernia, or CDH, occurs when the diaphragm does not fully form during the first trimester. Abdominal organs such as the intestines, stomach and liver can move into the chest, compromising lung growth and function. It’s life-threatening.

When our son was diagnosed, reliable methods for predicting survival did not exist. Journal and Web articles reported rates anywhere from 40% to 80%. After a month of digesting this information, we realized there was hope, but it was critical to deliver in a hospital with a well-equipped NICU and an experienced team of pediatric surgeons. Fortunately, we found an excellent hospital with a pediatric team who specialized in treating CDH babies only 45 minutes away. The hospital was Morgan Stanley Children’s at 165th St and Broadway in New York City. I sent an email to the pediatric surgery department, describing my circumstances and asking for information. Within 2 hours, six different surgeons had responded, including the head of the department and I had an appointment for a few days later.

That first month, I tried to stay focused and calm. There was hope, but no guarantee. Grasping the full medical meaning of my baby’s condition, while fighting the fear, is one of the most difficult things I’ve ever done. Still, it felt good to be actually doing something. I met with the surgeon, whose basic confidence impressed me, and changed my OB care to the high-risk group at the hospital. I endured more tests and planned the delivery with my doctor. This was all I could do for my son as there are no prenatal treatments for CDH. Once we had settled on the surgeon, the hospital and my OB, I had three months to wait.

After all the initial chaos and frenzy, everything became very still. I felt the baby moving and desperately savored every kick. I learned not to imagine myself holding him or playing with him. I ignored the future beyond delivery. Instead of preparing a nursery or buying clothes, I adopted a dog, whose care fulfilled my nesting urges. Instead of reading about breastfeeding, infant care or sleeping through the night, I read mysteries and light novels. I tried to keep my mind occupied with non-baby thoughts.

I almost felt like I wasn’t really pregnant except when the baby moved and reminded me. While hoping for the best and preparing for the worst, I tried to telegraph a lifetime’s worth of love to the baby I carried. My family, friends and the few co-workers I told were incredibly supportive and sensitive. Without their support, the well intentioned comments and good-natured ribbing of strangers—“You think you’re tired now? Wait till he’s screaming at two in the morning!”—would have been unbearable.

I joined an online CDH parents group called Cherubs. Through them, I learned how unique each case is. For instance, some babies have “holes” or hernias on the left side of the diaphragm, others on the right. The hernia size and number of organs in the chest vary too, affecting how much the lung’s space is impacted. What I didn’t know was that some babies with tiny holes didn’t survive and some babies with tiny lungs did.

I read story after story and rejoiced when the group reported that a baby stabilized and went home—and mourned when a family had to say goodbye. The weeks crawled by. I managed to keep the sadness at bay and the hope alive. I functioned at work, spent time with friends, prayed, and walked my new dog. Often during a visit to the high risk OB, I would hear sobbing in the adjacent exam room. Then the midwife would rush in and say something like, “I’m so sorry we’re running behind, I’ve just had to deliver some bad news.”

Appointments like this kept me from getting too comfortable. I started attending a healing service at a church near my office. It was a short lunch-time ceremony that rarely had more than ten congregants. I never told anyone there why I came, but I think they knew it was the baby. They were kind without prying. Around the same time, I started to think about hymns I would request if we needed to have a funeral.

Four and a half months after the initial diagnosis, it was time. While waiting to be induced, the baby became distressed, and so he was born by C-section. In the operating room, as the anesthesia took effect, I began to sob uncontrollably. I hadn’t cried in months, but now I couldn’t believe the waiting was over.

Moments separated me from what could be the biggest trial of my life. I had imagined every scenario from my son being fine, to the most horrible in which I held him as he passed away. After operating on me for what seemed like three minutes, the doctor said, “Okay, he’s almost here. I’m gonna hold him up for a split second so be ready to look.” And suddenly there he was: red, wrinkled, tiny, and trying to cry. I held the moment as long as I could. He was beautiful. We heard two faint cries as he was rushed from the room. This was a good sign. It meant he could actually draw breath.

As he was leaving the OR, the doctor asked, “What are you calling him?” My husband and I answered together, “Will,” as in “strong willed” and “will to live”.

Our doctors had told us they would perform the repair surgery when and if he stabilized. If he survived the birth and the surgery, we could expect six to eight weeks in the NICU, reflux, feeding problems and breathing issues. I was prepared for this scenario. I was prepared to have my child come home with a feeding tube or oxygen. I was prepared to administer reflux medications. I was even sort of prepared to say goodbye. But I was not prepared for what actually happened.

Will stabilized very quickly. He was put on a ventilator and given extra oxygen but was able to handle regular air by the second day. I only saw him briefly the day of his birth. He had IV tubes and wires attached all over his tiny body. His stomach was flat, almost svelte and he was barrel-chested. This is common with CDH babies. I thought it would be horrible to see him this way, but I actually found it reassuring, knowing he was getting what he needed.

The next day we held a baptism in the NICU with several nurses taking part. Our nurse seemed to think Will would do well. She had been working in the NICU for over 20 years and had seen many CDH babies. She said Will was a fighter.

She was right. The surgeon, pleased with Will’s progress, moved the surgery date up. He and his team came in on a Sunday to do the repair. Will recovered quickly enough to be moved to a gentler version of ventilation, which allowed us to see more of his face. By the sixth day, we were able to hold him for the first time. A miraculous eleven days after he was born, our son was discharged with no tubes, no oxygen and eating well. It was the best possible outcome. The surgeon, the doctors and the nurses couldn’t believe how well Will had done. We took him home.

Now, almost nine years later our son is a funny, happy, curious, imaginative, and above all, normal boy with nothing to show for his irregular and scary start in life except for the long scar on the left side of his chest.

* * * * * * * * * * * * * * * * * *

*We are indescribably blessed to have our son. We recognize his story is unique among CDH survivors and often think about the parents and children who face longer recoveries, more challenges, or the unthinkable.  Our thoughts, prayers, and best wishes are with them always.

Lisa D

Lisa Duggan is the founder of The Modern Village, and publisher of TheParentduJour.com and TheMotherHoodBlog.com.

6 thoughts on “JANE JACKSON Expecting life.

  • August 17, 2011 at 6:11 pm
    Permalink

    Thanks for allowing your story to be reposted. Your story is very, very similar to ours. Our son was diagnosed at 37 weeks, born by c-section at 40 weeks and spent 29 days in the NICU. He’s 14 months old today and just had his second CDH surgery. The first was at 4 days old. He’s doing amazing and so far as nothing other than a scar to indicate that he has CDH.

    Reply
    • August 17, 2011 at 7:15 pm
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      Neil – thank you for acting as inspiration for us to reach out to Jane, to republish. We continue to send love and prayers to your son and your entire family, and to each family dealing with CDH. – Lisa Duggan

      Reply
    • August 18, 2011 at 3:59 pm
      Permalink

      Neil — I loved your story (which Lisa forwarded to me). What a miracle! I am so happy for you all and hope that your little boy recovers easily from his second surgery. I always love to hear the happy outcomes. When we were waiting for Will, so much of what I learned was frightening. That’s one of the reasons I originally wrote for the Motherhood. I wanted other parents who were anticipating a cdh birth to have a hopeful story. Even though it is important to be practical and realistic, a little hope helps balance you.
      Thank you for making such a great effort to raise awareness!

      Give your little guy a long distance hug from another cdh boy!

      Jane

      Reply
    • August 18, 2011 at 3:59 pm
      Permalink

      Neil — I loved your story (which Lisa forwarded to me). What a miracle! I am so happy for you all and hope that your little boy recovers easily from his second surgery. I always love to hear the happy outcomes. When we were waiting for Will, so much of what I learned was frightening. That’s one of the reasons I originally wrote for the Motherhood. I wanted other parents who were anticipating a cdh birth to have a hopeful story. Even though it is important to be practical and realistic, a little hope helps balance you.
      Thank you for making such a great effort to raise awareness!

      Give your little guy a long distance hug from another cdh boy!

      Jane

      Reply
  • December 5, 2011 at 10:03 am
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    Wow….these stories are awesome to read. My son Trey was also born with CDH. We live in Bermuda and we didn’t at that time have the sophisication in ultra sound that you have in the US so it wasn’t until he was born that we discovered something was terribly wrong. In addition to that, he had to be flown to a hospital that could actually care for him. After birth Trey was transported to Children’s Hospital Boston where he was taken care of by a wonderful surgeon by the name of Jay Wilson who had performed over 300+ at that time (2004) CDH surgeries with various outcomes. Trey was born on a Monday and underwent surgery on a Friday. Same issue….his intestines and liver where in his chest. His heart was displaced and his right lung was slightly smaller than normal. Trey spent exactly 2 weeks in the hospital with a week in the NICU and a week on a general ward. We stayed in the Boston area for another week for CDH clinic which his surgeon held for an additional check up before leaving for Bermuda. Trey flew to Boston in an air ambulance and flew back to Bermuda on a commercial plane. A quick recovery indeed for such a traumatic start to life. We did have many sleepless nights as he suffered severely from reflux and gas which made him uncomfortable at each feeding but zantac did the trick. We happened to stumble upon zantac in conversation with a friend as we always thought zantac was for adults only. In two months Trey was feeding and comfortable and experiencing no side effects. Trey is our “miracle baby”. His story is featured on Children’s Hospital Boston’s website and I’ve attached the link below.
    http://www.childrenshospital.org/clinicalservices/Site1943/Documents/CDH_News_Issue_2.pdf (cut and paste the link in your browser)

    The hospital website is a great source of information and they are the leaders I believe in finding alternative ways of repairing the hernia including using stem cells to grow the necessary tissue for the repair. Trey has a Gortex repair and is due back in Boston in 2012 for a check up. Trey’s surgeon was also the inventor with the help of others in creating ECMO which is like dialysis for the lungs. ECMO helps the lungs to grow at a faster rate outside of the womb. We are very thankful and blessed that Dr. Jay Wilson was involved in Trey’s life at an early age and we still continue that relationship with him!

    Reply
  • Pingback: NEIL RUBENSTEIN Raising Aidan, and awareness of CDH. | theparentdujour.com

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