Julie Hannah

Diagnosis: Trisomy 13

By Jenny

My daughter, Joey, was born in March, 2003. She was a very healthy 9 lbs., 5 oz., which is a typical size for a baby from my husband's and my own families. She is now five and she really couldn't be any more perfect. She really wants a baby sister, though, just like my husband wants a son and he wants desperately to be present during the birth of his child (he was just arriving in Iraq when Joey was born). But, after everything that's happened, I just don't think I have it left in me to try again. Some people might say that's weak or defeatist; I think I'm just honest and scared half to death that something terrible will happen again. Though I think I've been through it all; I don't think there's anything that can happen that I haven't been through.

My husband came home from Iraq in March, 2004. After six months of pleading on his part, I stopped taking birth control and the next month, we started trying. It didn't take long and we were pregnant! He was thrilled, too. The baby was due in mid-August, 2005. Joey went with me to every prenatal appointment and John came whenever he was off of work. Everything was going well, no problems, no worries... until that 20 week appointment.

We were all excited. The ultrasound tech was chatting with us like everything was a-okay. She was taking measurements and freezing the frame on the screen. She told us she thought it was a boy and John was SO happy....John William, we said we would name him. I was asking a million questions like always and was used to getting most of my questions ignored. This day, however, the tech just ignored everything I was saying. She became nervous and eventually told me everything was fine but that she needed to stop the ultrasound and we'd have to come back when the doctor was there. I started to unravel a little at that point. I told her I wanted to see the midwife and she was with me in just a couple minutes, looking as confused as I did.

The ultrasound tech took her into another room and I felt like my heart was going to beat out of my chest. She told me everything was okay! Why were they acting like this? The midwife took us into another room and told us that the tech had seem some calcification's in the abdomen and that meant that something could be wrong with the baby. She said I needed to have my blood tested and needed to see a perinatologist. I was bewildered. I started bawling and I just couldn't stop. At that moment I felt like the poor baby I thought I was having for everyone else suddenly became the thing I wanted most in the world. I called everyone I knew who worked in medicine to ask what they thought it meant. Maybe CF? I'm a CF carrier but John was never tested. Maybe that's what it was...but then why would they test my blood for that again? That couldn't be it. So I started looking on the internet.

For the four days between the ultrasound and our appointment with the perinatologist, I lived on the computer. I read everything. Eventually I came to understand that a highly echogenic bowel is commonly thought to be caused by calicifications in the liver. Obviously I needed to take everything that tech said with a grain of salt so I changed my searches. I ended up finding a lot of information on ultrasounds of babies with chromosomal disorders, specifically Trisomy 13 and 18, that noted an echogenic bowel as a marker. That was my guess.

The appointment at the perinatologist confirmed my guess and crushed me at the same time. We got to see our poor baby boy with a 4D ultrasound. As we all watched, we were shown his strawberry shaped skull, malformed brain, cleft palate, missing eye, club feet, the holes in his heart, his intestines outside his body, and all of his extra fingers and toes. The perinatologist seem shocked that a baby like this could survive this long and then he compared the measurements from previous ultrasounds: the baby seemed to be getting smaller, not bigger. He said that he was not thriving and he didn't believe the baby would survive to a viable age, let alone survive delivery. Even if he did, if an amnio confirmed Trisomy 13, doctors could perform no "heroic" acts to preserve a baby incompatible with life. That did not seem to be an option for me at all. I would not cause anyone or anything to suffer, let alone the most innocent and unlucky little creature in my belly.

I had the amnio and when the FSH results came back, they showed three of the number 13 chromosome: Trisomy 13. By then, I had already made an appointment with a women's clinic in Georgia, just a couple hours from where we were living. The final results were faxed to me at the clinic on my first day there to have what is deemed a "therapeutic abortion." Why some people look down on abortion is beyond me. Why is it your business if it's not your body? But while I was there, being cared for by such a wonderful group of women, doctors, nurses, mothers, sisters...all I could think about was how much I wanted a healthy baby and how I would have gladly taken home all of the babies of the other women in the clinic. I was the only person there for a therapeutic abortion but it didn't make me better or worse than the other women. I was just sad in a different way. I was kept away from the other women while I was there for everyone's sake, yet we all walked by the anti-choice protestors on the way in. I thought, "Don't they know that I want my baby to live?" But it didn't matter. My undying love for my idea of my baby and the knowledge that I would never do anything to make him suffer pushed me through.

On the first day at the clinic I was given some Valium to calm me. I went into a room with my husband and watched an ultrasound tech measure the baby. He was even smaller than just a few days before. He was the size of an 18 week old baby but he was a month older than that. We watched her insert a needle into my belly and into his heart and I closed my eyes and let the tears streak down the sides of my red face. His little heart had stopped. A doctor came in and assisted a nurse by inserting a large handful of laminaria. I was so overcome by the emotional and physical pain of it all that, all at once, it was like I shut down. That night was hard. I spent a great deal of it rocking back and forth on the hotel room bed, clutching a heating pad and keeping the bottom of painkillers close by. While my mother, husband, and daughter tried to sleep, I laid there in the darkness and watched them. I wondered how much pain they must be feeling and just heaped that onto myself. I spent that night crying in silence. It wasn't the first or the last time, though.

The next day went quickly. When I went into the room with the doctor, I was crying uncontrollably. She told me, "You don't have to do this if you don't want." I told her that I'm the one with the Trisomy baby and she froze. She thought I was supposed to have gone first that day and, at that moment, she looked into my eyes and her own filled with tears. I asked her to hurry and she told me to lay back and breathe deeply.

Everything was hard after that. EVERYTHING. I felt like I just didn't want to do anything for quite a while and then one day, for no reason, I just stopped feeling like that. It still hurt every day at first and the baby's due date and holidays were terrible but time moved on and so did we. The September after the due date, we moved to Tennessee. We moved out of the house with the empty nursery and to a place to try again.

After Christmas that year, we decided we'd give it another go. I was so scared but the doctors kept telling us it was just a fluke... bad luck, they'd say. Never mention the 8 other men in my husband's company in Iraq whose wives had pregnancy losses, Trisomy babies, failure to conceive. We ignored it and moved on. Well, we got pregnant in January and we were cautious. We didn't tell anyone. We went on with life as if nothing was going on which made it even harder when, on my daughter's 3rd birthday, I started bleeding. The next morning I woke up soaked with blood. I frantically got my mother-in-law to watch Joey and I took off to the doctor.

Imagine laying on a table, belly exposed, with an ultrasound searching for any hope of life and a male, 60's something doctor telling you, "Well, at least it happened sooner rather than later this time!" and then walking out the door. What would you do? I know what I wanted to do. I wanted to smack him! But...I didn't. They told me to go home and let everything pass on its own and come back in a week. They karyotyped my chromosomes (at my pushing and prodding) and the only thing they found was which allele I carried for Cystic Fibrosis (I'm a carrier. I don't have it). It was no help. The doctor told me it was probably the same thing that happened before and sent me on my way. Needless to say, I didn't go back there.

Fast forward three months: I'd found a new OB, and had gotten pregnant again. I was gung-ho about it this time. I thought that I could remain detached until I got a great 20 week ultrasound or an amnio. I had every test they could do and everything was perfect (well, except for my blood pressure in the office but you'd have high blood pressure, too, if the ball dropped every time you went to the OB!) Joey and John went to EVERY appointment, EVERY test, everything. Once 20 weeks came around, I was losing my mind. I was SO nervous but wanted So badly to buy baby stuff and to pick out a name. The ultrasound was SO great. A nice big baby girl... perfect size, perfect everything. Julie Hannah, we called her. Joey tried out the ultrasound, pointed to the parts of her face, it was a great day! We got our tape of the ultrasound and RAN out the door. I called everyone! I was so happy that this was finally over.

Well, Thanksgiving came around and I was getting pretty big. My family came down for the holiday and it was great. I started feeling uneasy, though. It seemed as though everything was too perfect. I was right. Two weeks later we went in for a routine checkup. This was my last every two week check up. After this I had to go in every week. I was nervous and I kept saying something isn't right, something is NOT right. I got up on the table, laid back, and listened. Nothing but the sound of my own heartbeat. She kept searching and my heartbeat kept getting faster. She told me in no uncertain terms to get down and go right to ultrasound because she was afraid I was going to have a stroke, as fast as my heartbeat became.

Stroke or no, as soon as the ultrasound tech took one look at my baby, her throat clenched up and she quickly moved back. I felt her staring at me and I said, "WHAT?" She said there were no heart tones. Joey asked what she said and I told her that the baby had died. Joey screamed and sobbed and jumped on my belly. She hugged it and yelled for the baby to come alive. All I could do was hold her while we all cried. We left through the back entrance with instructions to come back in twelve hours through the hospital. I called my mom and she made the four hour drive from Ohio in three hours time. John and I left in the freezing December night for the hospital while Joey and Mom laid on the couch together. I couldn't speak except to whisper goodbye and I'll be back soon.

We were at the hospital for a very long day and a half. After trying other methods, an OB finally gave me a Pitocin IV and I pushed my stillborn daughter out onto the bed after only two hours, under the sheets. Her little umbilical cord was twisted so tightly that it had cut off everything that was sustaining her life. The doctor and nurse came in, looked at her, and took her away and I called my mom to come and bring my daughter. My pulse, temperature, and blood pressure were startlingly low and they wouldn't let me leave until it was normal. I knew that Joey would be the only medicine that could help me. Almost as soon as she got there, my pulse and blood pressure rose to a normal level and they told me I could go home. They tested baby Julie, karyotyped her chromosomes, tested the placenta...nothing. The only explanation was that, somehow, her umbilical cord became so constricted that it resulted in her demise. Strangely enough, two other soldiers who'd served in Iraq with John had similar outcomes in their wives' pregnancies. Why the answers leave me with more questions, I'll never know.

After everything I'd already been through, I was practically a pro at going through this again. I knew nothing but time would make me more motivated to get out and less tearful, however, I didn't expect what would come next. Soon after all this, I began to very quickly pick out the Moms who had a preschooler and a baby. They were all around me. Busy Moms with their little helper daughters and their brand new "baby dolls." It felt like a knife going right through me! At baseball, at birthday parties, on television, in the grocery store...The last straw came on a day when our Moms Club had a Halloween Party. Being relatively new to the club, it was a bit uncomfortable for me to circulate through a room of strangers. Someone would say something to me and I would barely respond, not wanting them to see me cry. The longer the party dragged, the more pain I felt. I remembered that day in the clinic when I wanted to scream but I just couldn't shut down this day. As soon as Joey seemed to have a break in the action, I snatched her up and we left. I told myself that I wouldn't do that again. I would not put myself in the position where I would have to just sit there and torture myself. I would quit going to Moms Club functions and stay away from people with babies!

That didn't work out well since I volunteered to coach Joey's soccer and two of the moms had babies. I did find, however, that after I befriended one of those moms and her two year old developed an almost constant need for my husband or myself to hold her, I felt SO much better. When her youngest started learning to walk, he seemed to gravitate toward us, too. We loved to hold him, give him a little squeeze or a bounce. It was such good medicine for our hurt! Now our families are great friends and they understand that we will never be fully healed from our pain. They are more than happy to let us hold their babies and the babies reciprocate.

Today the question remains, however: what do we want to do? Are we going to give up trying? Or are we going to try again soon? Or should we wait and make the decision later? Most days I think my husband should just get a vasectomy and we should stop wondering. There are too many humans in this world anyway and we have already produced a beautiful little girl. Other days I look at John from across the room and I hurt inside knowing that he was never there when she was born. He didn't even meet her until she was six months old. I want to give him that and I want to give him a son but, more than anything, I don't want to have to go through this all over again and I NEVER want to have to tell my daughter that her baby sibling has died and then listen to her pain-filled screams and sobs. And so I won't...at least that's what I think today. Ask me tomorrow and maybe I'll feel differently. I'm allowed, you know....anybody who's been through what I've been through is allowed to feel any way they want.


Books on Loss and Grief

Our Heartbreaking Choices: Forty-Six Women Share Their Stories of Interrupting a Much-Wanted Pregnancy

The Dive :: A Memoir

A Time to Decide a Time to Heal: For Parents Making Difficult Decisions About Babies They Love

Precious Lives Painful Choices: A Prenatal Decision-Making Guide

Sunshine After the Storm: A Survival Guide for the Grieving Mother

Empty Cradle, Broken Heart, Revised Edition: Surviving the Death of Your Baby

Empty Arms: Coping With Miscarriage, Stillbirth and Infant Death

A Silent Sorrow: Pregnancy Loss

Unspeakable Losses: Healing From Miscarriage, Abortion, And Other Pregnancy Loss

Surviving Pregnancy Loss: A Complete Sourcebook for Women and Their Families

Difficult Decisions: For Families Whose Unborn Baby Has a Serious Problem

Books for Fathers, Family, Children and Friends

Couple Communication After a Baby Dies: Differing Perspectives

For Better or Worse: For Couples Whose Child Has Died

How to Say it When You Don't Know What to Say: The Right Words For Difficult Times

A Guide For Fathers: When A Baby Dies

When Your Friend's Child Dies: A Guide to Being a Thoughtful and Caring Friend

When Pregnancy Fails: Families Coping with Miscarriage, Stillbirth, and Infant Death

What You Can Say When You Don't Know What to Say: Reaching Out to Those Who Hurt

Books about Trying Again and Pregnancy after Loss

Journeys: Stories of Pregnancy After Loss

Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth, and Infant Loss

Pregnancy After a Loss: A Guide to Pregnancy After a Miscarriage, Stillbirth, or Infant Death