Monday, April 25, 2011

Twin nightmare: Pregnancy and disease

By Tomie Parks 
TTTS mom

I can’t hug my children.
I never could. They died the day they were born.
Life since then – Jan. 8 – has been a mission to try and understand the disease that robbed me of my boys, Tanner and Hunter.
That disease is called Twin-to-Twin Transfusion Syndrome, and this is a story of how terrible it is.

The beginning
Last spring I lived the life of a new bride.
March of Dimes necklace.
I had a house to furnish, a husband to cook for and new family members to meet. There wasn’t a moment to spare until summer came.
That’s when Rusty and I found what it meant to be newlyweds. We had no need for plans. All we craved was each other’s company, and that made the most dreaded of chores, like cleaning the toilet or washing the dishes, seem more like a vacation. Life was full of Hallmark card bliss.
We discovered at the end of September that I was pregnant.
Lots of adjectives can describe our reaction: Thrilled, scared, tired, worried, surprised, nervous, and overwhelmed.
In short, we were the typical first-time parents, trying to make sense of everything we heard from doctors and saw on ultrasounds.
October brought on a surge of hormones that made me cranky, but it also afforded me the opportunity to see my baby’s heart beat – and on Oct. 25, I learned there were two babies inside my belly.
“How did you make two?” my bewildered husband asked me, as he sat staring at the ultrasound.
I didn’t have an answer then, and I don’t have one now.
Neither of us had any family history of twins, nor do I know of any special diet or vitamin that makes embryos split. It just happened, and for a while, I was the mother of twins.

Being pregnant
With the news of twins, the visits to my maternal healthcare providers increased.
My obstetrician, Dr. Whitney Keller of Austin, wanted to see me twice a month, and fetal specialist Dr. Jeffrey Ridgeway wanted to see me every other week.
“All twin pregnancies are risky, so it’s important to keep your twins monitored,” Dr. Keller explained.
Her tone didn’t scare me, but I learned all I could about “experiencing a twin pregnancy” nonetheless.
The first order of business was to determine what kind of twins mine were.
Memories will remain.
An ultrasound by Dr. Ridgeway showed they were identical, not fraternal.
“We can tell by the fact that they share a chorionic membrane,” Ridgeway said. If you’re babies were fraternal, they’d have their own chorions.”
As my appointments continued, I learned that pre-term labor is the most common risk of twin pregnancies, both identical and fraternal. Its occurrence rate is at more than 50 percent.
“Preterm labor happens between 20 and 34 weeks,” Keller said. “It happens because your body can no longer carry the pregnancy.”
And in the science of reproduction, she said, preterm labor makes sense.
“When you have two fetuses at 20 weeks inside you, the body thinks it’s carrying a full-term fetus of 40 weeks. As far as the woman’s body is concerned, it is time to give birth,” Keller said. “That’s why we monitor twin moms so much. We want to keep the babies inside as long as we can.”
The other twin pregnancy risk is Twin-to-Twin Transfusion Syndrome (TTTS), but its occurrence is more rare, happening only in 10 percent of identical twin pregnancies.
“The Syndrome is bit harder to explain,” Ridgeway said. “It’s a natural disease of the placenta that affects both babies. Through a series of abnormal blood vessel connections in the placenta, one baby gets too much blood, the other too little.”
When I learned about TTTS, I was only 12 weeks pregnant. All discussion about it at that point was for awareness.
My babies were healthy and growing, so all was good.

Good news and bad news

Only one thing was jolly about the holidays. And that was discovering that my babies were boys.
Images of little Rustys danced in my head, and I was pleased, but the discomfort of TTTS took full force.
My stomach was so large at Thanksgiving that I had to hire a friend to wrap my Christmas presents. I couldn’t walk to the mailbox without leaning on someone, and I suffered from what seemed like a never-ending flu. The nausea was so persistent that my spirit suffered.
Tanner & Hunter's footprints.
Rusty was there, holding me and loving me, but he could not lift my spirit. I felt lost. Trapped.
And then Dec. 16 came, and I got the diagnosis. My twins were two of the unlucky few who had to endure TTTS.
Dr. Ridgeway was the one who saw the signs first.
“The Doppler radar shows that there’s an uneven blood flow from Baby A to Baby B,” Ridgeway said. “It’s not cause for alarm yet. If things progress, then we will have to take action. But for now, I want to keep an eye on them. Come back in seven days.”
The tears came when I got to my car, and they kept on coming well into the night. I truly did not want to live the Herculean task that had become my life. I felt scared and weak.

More bad news
I was back in Dr. Ridgeway’s office seven days later.
Not much had changed, so he told me to go home and try to enjoy Christmas.
“Remember, this is not your fault. You did not cause this,” Ridgeway said. “And there’s nothing you can do or not do that will make this any better or any worse. It is something that just happens.”
That sweet man, he thought I’d be able to comprehend those words then like I do now. But I was a woman whose unborn babies were jeopardized. A rain puddle would have been more lucid.
So I sat distraught as Christmas came and went. I couldn’t focus on anything, and it pained me to hear someone talk about the boys. Relatives got them gifts, but I couldn’t accept them. It was too soon to talk about a future with two little boys when the rest of my pregnancy was so uncertain.
My next appointment with Dr. Ridgeway came on Dec. 28, and I was more than ready for it. I needed confirmation of something, good or bad.
“The red light is on this time. We’ve got to act,” Dr. Ridgeway said. “The blood flow was minimal at first, and if it stayed like that longer, chances are you would have been fine. But it looks like things are speeding up. We’ve got to send you to Houston.”
He referred me that day to Dr. Anthony Johnson, a fetal intervention specialist at the Texas Children’s Fetal Center in Houston – one of the 11 facilities in the United States that is capable of treating TTTS.
My appointment was set for 9 a.m. Dec. 29.

Surgery
Dr. Johnson had already been briefed on my condition, so there was no need for paperwork or medical histories.
Rusty and I went straight to the ultrasound room, and I was scanned for what seemed like the thousandth time.
It was an agonizing two-hour scan; the fetal specialist pushed and prodded until he got accurate measurements and clear screen shots. With each prod, I felt less like a girl and more like a semi-conscious cadaver.
When the examination was over, Dr. Johnson disappeared for 15 minutes, and we were ushered into a tiny white room with a dry erase board.
Rusty tried to be optimistic. I remained afraid.
Dr. Johnson came in with two assistants and a bunch of paperwork.
“OK folks, you have a decision to make,” Johnson said. “Your case is at what we classify as Stage 3 Atypical Twin-To-Twin Transfusion Syndrome. That means that the bladder of the donor baby is still visible, but polyhydramnios has occurred.”
We sat there silent and helpless as Dr. Johnson continued to speak.
“In typical Twin-to-Twin Transfusion cases, the bladder in the donor baby disappears from ultrasound views because the excess of amniotic fluid makes it difficult to see,” Johnson said. “Polyhydramnios is poly for too much, hydra for water and amnios for amniotic sac. It means that there’s too much fluid in the amniotic sac.”
In my case, Hunter was the donor, and Tanner was the recipient. Hunter did not have enough amniotic fluid, so he was pinned under my left rib.
“The baby on the left (Hunter) kept on sending you, mom, a hormone that said, ‘I’m stuck, make more fluid.’ And you did, you kept on making fluid and sending it, but (Hunter) never got any of it. Because of the abnormal vessel connections in the placenta, it kept on going to the baby on the right (Tanner). So he’s over there swimming it up.”
But it wasn’t just Hunter who was in danger.
As the recipient, Tanner was at risk for congestive heart failure.
“The recipient baby’s heart keeps working and working to process all of the blood it’s getting,” Johnson said. “Eventually the heart becomes enlarged and strained.”
This is the part of the condition that creates red blood cell imbalances in babies who survive TTTS. With low counts of red blood cells, the donors are anemic and pale. With high counts, the recipients are polycythemic and appear pink or red.
So Dr. Johnson said Rusty and I had four options.
“You can do nothing and let the pregnancy run its course. That’s a 10 percent chance that the situation will not progress and that your babies will survive,” Johnson said. “The second is do have an amniocentesis. That ups fetus survival odds to about 20 percent. The third is a laser surgery that will sever the blood the connections between the babies. It has a 60 to 70 percent chance of sustaining the pregnancy. The fourth option is to abort. I can’t make the decision for you. I can only tell you what the numbers are.”
That was a big decision to make, and we only had a few minutes to think about it. If I was going to have the surgery, then I would need to have it soon, for Dr. Johnson was worried about the length of my cervix.
“Your cervix has already shortened to 1 centimeter,” Dr. Johnson said, noting that anything less than 3 centimeters is a sign of preterm labor. “The surgery or amniocentesis will reduce the amniotic fluid, which will take the pressure off your uterus and hopefully slow things down.”
With that said, I was booked for the laser surgery at 5 a.m. Dec. 30.
It was the most we could offer our sons at the time.

Bed rest
The follow-ups with Dr. Johnson and Dr. Ridgeway went well.
My stomach was smaller, I felt better, and I got to go back home to Austin.
The surgery worked. All of the abnormal blood vessel connections had been severed, and the ultrasounds showed no signs of fetal distress.
My babies were no longer killing each other, and I was thankful for it.
But my joy was short.
My cervix, worn from the excessive amniotic swelling, continued to shrink and by Jan. 5, I was parked in an Austin hospital on bed rest.
I was under the care of Dr. Keller, Dr. Ridgeway and their associates. One fetal specialist after another would visit me everyday at 6 a.m., 11 a.m., 4 p.m., 8 p.m. and midnight.
Every time they would ask me if I had felt any contractions. And every time I would say no.
One morning, Dr. Keller came to counsel me about what would happen if labor progressed. She said since I was only 21 weeks pregnant, my babies weren’t viable.
“There won’t be anything anybody can do to save them until you get to week 24, but week 27 is really better,” Keller said. “Anything before then is going to be super hard on the babies.”
I could do nothing but nod and e-mail an update to Rusty.
Then I waited for a few days, praying that my babies wouldn’t have to suffer.
Time seemed to stand still with no news and no updates until 8:15 a.m. Jan. 8. That’s when my water broke.
My heart fell. Rusty and I knew the game was over at that moment. We wouldn’t be able to take our babies home.

Birth and death
Tanner Russell Parks was born at 6:28 p.m., and his brother, Hunter Harold Parks, was born at 6:36 p.m.
The scene replays in my head.
The nurse put Tanner in my lap, and I swooned in a kind of love I’d never felt before. His little face was so sweet that I thanked God for letting me see it. The 30 minutes he lived were worth all the sickness, the surgery and the bed rest. He never took a breath or opened his eyes, but his heart beat and that was all that mattered.
The tinier Hunter was stillborn. He had died in the birth canal. My connection with him wasn’t as strong. His body was much less developed, and without a heartbeat, he felt foreign and empty. But that doesn’t mean I didn’t grieve for him.
I wailed in horror and pain as the two babies I carried, the babies I loved, were wheeled to the morgue.

And then

I woke up Jan. 9, hoping it was a nightmare. It wasn’t.
Rusty was on the phone with a funeral home, trying to arrange for a twin infant cremation. And I shook with grief, not able to do anything else.
There was a blue package sitting on a chair.
I asked for it, and Rusty handed it to me.
He said the nurses left it for me while I was asleep.
That little blue box is all I have left of my babies now. It was a gift from the March of Dimes – a nonprofit organization that funds research for ways to prevent premature birth and pregnancy disease.
Inside the box were my babies’ receiving blankets, their hospital name bracelets and some photos. March of Dimes had also given me a silver heart-shaped necklace and provided me with some information on grief counseling.
That necklace is now my badge of honor, as to me the heart represents the battle I fought with TTTS.
My recovery has been a journey of its own.
Tanner & Hunter's urn.
The first week was a whirlwind of violent tears and drug-induced sleep.
Rusty and I were devastated and beaten, but we were far from alone. A beloved grandmother, two ready-to-work mothers and precious friends, they were all there for us: Cooking, cleaning, visiting, weeping and praying.
Then on the eighth day, I pulled myself from the bed and went to the beauty parlor. I was tired of looking like a zombie. I left feeling refreshed, with my hair styled and my eyebrows waxed.
On the ninth day, I took my still-sore body to the walking trail at Austin’s Town Lake. It took me three hours and a bunch of breaks, but I walked every inch of that 3-mile loop.
And that’s what launched my re-entry into society.
I visited friends, exercised, traveled and wrote thank-you cards to the dozens of people who sent gifts and sympathy cards.
And by February, the student within me wanted to learn everything I could about TTTS, so I read every piece of literature I could find.
In March, my heart still ached for the two babies I lost, but my brain began to understand the disease that destroyed my pregnancy. Neither my body nor my actions created the disease. Like an air bubble that sometimes disrupts the flow of water in a hose, TTTS is a kink in pregnancy that sometimes happens.

The future
My prognosis for future childbearing is good. All of my doctors agree that I have all the potential in the world to experience a healthy second pregnancy.
And if Rusty and I happen to conceive another set of twins, the chance of them suffering from TTTS is low.
All of my doctors said that’s just not likely to happen. They agree that, “For most TTTS moms, it’s a once-in-a-lifetime thing.”
So Rusty and I have chosen not to live in fear. We will live as if we want an addition to our family, but we will not force it with ovulation charts or in-vitro fertilization. We are not yet ready for that kind of action, nor do we see any need for it.
And as the month of April progresses, I can’t help but think of my original May 19 due date. So I weep.
The tears for Tanner and Hunter come sporadically, without warning; they probably will for some time to come.
But I am grateful neither of my boys had to anguish in pain before their inevitable death.
And I’m grateful I could tell their story. Hopefully it will do some good. It already has. After hearing my tale, several people have donated their time and money to March of Dimes – the group that comforts moms without babies.

All photos are by Mitch Green of Centex Photo.
And to help me in my efforts to raise money for March of Dimes, please visit my fundraising page

5 comments:

  1. That was a very touching piece... *as she reaches for another tissue* ...thank you for posting it, so I could understand what you went through.

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  2. and for a while, I was the mother of twins.

    You still are and always will be. Thank you for sharing your story on Faces of Hope/Faces of Loss.

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  3. Thank you so much for sharing. Your sons will never be forgotten.

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  4. This was beautifully written. Straightforward. Emotional. Honest.

    But obviously, I'm mostly just upset that a friend of mine had to go through something like this. Send me an email if you get the chance updating me on how you're doing.

    josh

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  5. I found your blog on faces of loss, faces of hope. I am so sorry for your loss. I too lost my baby, Lily Katherine, who was stillborn at fullterm on March 16, 2010. You are a wonderful writer. It's good to find people who 'get it' in the blogging community. I'd love to have you follow along on my blog as well; www.roseandherlily.blogspot.com

    ReplyDelete