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Raising Special Needs Kids Raising Special Needs Kids

They did this for the "benefit" of their child...hard to see that.

Posted by on Oct. 11, 2013 at 10:50 AM
  • 46 Replies

Our impossible parenting choice

When prenatal testing showed that my daughter had cystic fibrosis, Ross and I faced a decision nobody wants to make

TOPICS: REAL FAMILIESPRENATAL TESTINGCYSTIC FIBROSISABORTIONGENETIC TESTINGLOVE AND SEXMARRIAGECOUPLINGMOTHERHOODPARENTINGEDITOR'S PICKS

Our impossible parenting choiceA photo of the author and her son.

The first time I saw a clear image of Annie was at the doctor’s office three and a half years ago, on a gray afternoon in the beginning of January.  I was 30 years old and approaching my fourth month of pregnancy. As my OB-GYN ran a transducer across my stomach, she laughed. Annie’s legs were stretched out straight and her tiny feet rubbed against each other.

“The baby won’t move those long legs of hers apart,” the doctor said, still laughing.

“That’s what Addie does,” said my husband, Ross, referring to how I sleep at night — legs stiff and straight while each foot massages the other in an effort to quell my anxiety.

Lying naked on the exam table, with nothing but a paper sheet covering my swollen belly, I wished that I could take my feet down from the stirrups and rub them together. I needed to relax, but there was no time. I wanted to know before my July delivery date if our baby had cystic fibrosis, which meant I needed to have an amniocentesis performed immediately.

No one in my family had ever been diagnosed or displayed symptoms of cystic fibrosis. But according to a routine genetic blood test, which I had agreed to weeks into my pregnancy, I was a carrier of the lifelong, hereditary disease that causes abnormally thick, sticky mucus to form in the lungs, which clogs them and makes it very hard to breathe. Recurring lung and chest infections, pneumonia, shortness of breath, persistent wheezing and coughing, as well as frequent sinus infections are all complications of the disease. The chronic inflammation of the lungs eventually leads to their destruction, thus shortening the life span of those affected to an overall median age of 36 ½ years. Frequent lung infections coupled with serious digestion problems cause growth difficulties as well as weight gain problems, which can lead to malnutrition. Affected males have approximately 99 percent chance of infertility.

Immediately following my diagnosis, my OB-GYN encouraged Ross to get tested. He was also a carrier. Turns out we were two of the 10 million plus Americans who are unknowing, symptomless carriers of the defective cystic fibrosis gene.

“I rarely come across couples who are both carriers,” my doctor said. “But don’t worry, you have a 75 percent chance of having a perfectly healthy baby.”


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I raced home to get online and figure out what she was talking about. At the time, all I knew about cystic fibrosis was that a character from MTV’s “The Real World” had allegedly died from complications of the disease at age 25. Turns out every human carries two CFTR (cystic fibrosis transmembrane conductance regulator) genes. Ross and I had one working copy of the gene and one copy of the gene with a mutation – meaning we are carriers but asymptomatic. If our fetus inherited two defective cystic fibrosis genes — one from each of us – that would mean a definite CF diagnosis. The chances of that happening were just one in four.

The odds were in our favor. But I grew alarmed when the geneticists informed me that Ross and I both happened to carry a particularly defective mutation of the disease, meaning our baby would have a severe case of CF. “If the baby is diagnosed, be prepared to spend a large portion of his or her life in the hospital,” the geneticists said. We were also told that while 36 ½ was the average life expectancy, our child, if diagnosed, would most likely die at a much younger age due to a rapid decline of lung function in early childhood leading to respiratory failure. In addition to frequent hospitalizations, pounding on the baby’s chest for a few hours every day to loosen the mucous in the lungs (chest physiotherapy) would be necessary, and a lung or heart transplant was a strong possibility. Later that day, I found an article in the New York Times stating that “the median survival for all lung transplants is about 50 percent in five years. That is much less than the survival for kidney, heart or liver transplants.” My heart sank.

For the next four weeks, awaiting the results, Ross and I went through the motions of life: working, eating and socializing, all in a trance. I tried to pretend that the baby definitely did not have CF, but all I could do was think about the what ifs. So I attempted to take control of the situation by pretending I had some. My obsessive-compulsive disorder, which I had worked with various therapists throughout my adolescence to control, quickly reappeared. “If I fold this shirt perfectly, then the baby will be OK,” I told myself. “If I don’t watch reality TV for a week, then everything will be fine.”

“Think positive thoughts,” my best friend said encouragingly in an attempt to comfort me. “The odds are in your favor that everything is going to be just fine.”

Although we had to wait 30 days for the results of the amniocentesis, we only had to wait five to find out the baby’s sex. It was a girl. My parents had three grandsons, so I was excited to hear that she would stand out as their first granddaughter. I couldn’t wait to introduce her to my childhood doll collection that I had secretly saved for her arrival. I imagined our tea parties in the park just like the ones my sister and I once shared. I had a strong desire to fill the baby room closet with miniature floral dresses and pink onesies.

But I didn’t dare enter the baby shops that lined our Brooklyn neighborhood. Not yet. Instead, I kept my head down and tried to steer clear of negative thoughts. At night, lying next to each other in bed, Ross and I fought the urge to discuss who she might look like and what we should name her. But we couldn’t help ourselves. We both agreed on Annie.

Two weeks into our wait I decided to try to stop thinking about cystic fibrosis altogether. I threw myself into completing my master’s degree and my job as a reporter. In the evening, I would distract myself by watching hours of mind-numbing television.

I was in the midst of watching a TV show when the phone rang. Ross and I froze. It was late on a Friday afternoon and officially 28 days into our wait. When I answered and heard the genetics counselor on the other end of the line, I smiled and restrained myself from jumping up and down. Before I had the amniocentesis, the geneticist informed us that if he called, it would be good news. Bad news would be delivered by my OB-GYN.

“Addie?”

“Hi!” I said, before letting out a high-pitched, “It’s me!”

“I’m really sorry, Addie,” he said. “But the results came back positive. Your baby has cystic fibrosis.”

After that, I stopped listening. Ross came into the kitchen and mouthed, “What?” with a faint smile. I shook my head as the genetics counselor continued to talk. I finally said, “OK. Thank you.” Hung up and let out a wail.

Although Ross and I had already discussed what we would do if the results came back positive, the stark reality of an abortion scared me while its finality paralyzed me. That night Ross suggested we take a ride upstate to my parents’ house. We were both too weak to comfort one another. We also wanted to think our decision through one last time.

“I can’t imagine watching her suffer,” Ross said before I interrupted him and blurted out, “and possibly burying her!”

It wasn’t a long conversation, but deciding to terminate a pregnancy we so desperately wanted to keep was excruciating. I felt like throwing up.

Our family members stood behind our decision, but when we voiced our choice to some close acquaintances, they suggested we rethink it.

“I know someone with a 12-year-old daughter with CF and she’s perfectly fine,” one said. “She even plays soccer.”

“Are you sure you want to do something like that?” another asked. “I’ve heard people with cystic fibrosis can live until they’re 50.”

I felt like screaming at both of them. I wanted to say, “Shut up! Do you know how hard this is? Do you think I actually want to give up my baby?” I quickly realized that I needed to steer clear of the subject matter with everyone except my inner circle of very close friends and family.

But that doesn’t mean their comments didn’t get to me. I wondered if maybe they were right and I was wrong. What if Annie’s body could somehow handle a “particularly defective strand of the disease.” What if a cure were to be discovered in her lifetime? Then how would I feel about having given her up?

“Let’s not continue to torture ourselves,” Ross said when I mentioned my concerns.  I knew he was right, but I couldn’t help thinking that I had become a horrible person.

The following week, Ross and I said goodbye to Annie. I tried to concentrate on the TV monitor playing “Live! with Regis and Kelly” in the crowded yet noiseless waiting room filled with young women waiting to terminate their pregnancies. Ross and I kept telling ourselves that it could be worse. What if it was 15 years ago and there was no such thing as prenatal CF testing? Then we would have had to watch our little girl suffer and more likely than not bury her as an infant. A concept I couldn’t and still can’t fathom.

Lying on the cold metal table, with my legs straddled in the air, I thought about Annie’s long limbs. I wanted to rub my feet together, but there was no time. Since I was already in my second trimester, having a legal abortion in the state of New York meant prompt action. When the anesthesiologist approached me with a faint smile and started to explain how she would monitor me during the procedure, I interrupted her. I felt compelled to tell her that this baby was not an accident.

“The baby is sick.”

“I know.” She took my hand in hers. “It’ll be OK.”

“Sorry,” I said.

“Don’t be. It will all be over soon.”

I closed my eyes and whispered, goodbye Annie.

Afterwards, my OB-GYN and the doctor who performed the abortion told Ross and me to hold off on trying to conceive again.

“Wait at least a year,” the doctor told me during a follow-up visit. “You just experienced a devastating loss. You need time to mourn and heal.”

I tried. Ross and I went to several support groups for couples who had decided to terminate a pregnancy due to positive genetic testing. We were surprised by the large number of want-to-be parents in the same situation as us, while simultaneously comforted by their painful stories.

“Maybe we should wait,” Ross said, one morning following a tearful, sleepless night.

Even though I knew he was right, I felt ready to become a mother. Ready to walk away from the horror that had just washed over us.  I was ready to be happy again.

“I want a baby,” I said.

“Me too.”

So just four months after saying goodbye to Annie, I was pregnant again, which meant another prenatal chromosomal abnormality test and another, albeit shorter, wait for the results. This baby also had a 25 percent chance of having CF.

After a doctor preformed a CVS (chorionic villus sampling) test to determine whether the baby carried the disease, I was scheduled to attend a work function. I decided to go home instead. I couldn’t concentrate, let alone interact with colleagues. I wanted to be by myself until the results came back. So for almost two weeks, I didn’t leave our apartment.

During a friend’s wedding weekend on Annie’s predicted due date — July 4 — we found out that the fetus did not have cystic fibrosis. The good news reduced me to tears. While I was relieved and able to breath again, I also felt a profound sadness rush over me. With the negative results in, I was finally able to grieve Annie.

That was two and a half years ago. A lot has changed. Ross and I live in a different apartment in a different part of Brooklyn. At 2 ½, our son is a little boy who likes to blow kisses, give hugs and throw toys out of the tub while laughing uncontrollably. If it weren’t for Annie, I never would have met him, which makes me so happy that I didn’t listen to the doctors about postponing our second try. I can’t imagine my life without him in it.

Ross likes to tell me that Annie is our son’s guardian angel, but that idea scares me. Do I want my son’s protector to be someone whose mother gave her up? Ended her existence prematurely?  She must be so mad, disappointed and hurt. So I keep her ultrasound images, along with a Hallmark “It’s a Girl!” card that my best friend sent, along with a Christmas tree ornament engraved with Annie’s due date, which my parents gave me the week I found out I was pregnant, locked away in a closet far from my son’s bedroom.

“We did the right thing,” Ross tells me on the rare occasion when I give myself permission to think about her. “We helped her. She was sick.”

I believe him, I do. But Annie still haunts me. When her due date rolls around, or when our son has a bad cough, or with the birth of my sister’s baby girl — I think of Annie. And once every year — on her birthday — I let myself cry. I think about how it would feel to hold her in my arms. And then I ask her to please understand that I did what I thought was best for my child.


by on Oct. 11, 2013 at 10:50 AM
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Replies (1-10):
Mipsy
by Chelle on Oct. 11, 2013 at 11:09 AM
I dont even know what to say.
MommyofRnW
by on Oct. 11, 2013 at 11:11 AM
Looks like she did it so she could live a good life not for the benefit of the baby, who I woke heartily believe she killed.
jjamom
by Michele on Oct. 11, 2013 at 11:22 AM
What a sad story. :(
SnapShotMama
by on Oct. 11, 2013 at 11:29 AM
..... I'm speechless. .. out of all things a baby could have. . that is why annie had to die. my ds has a trisomy. We didn't find out till later but even then while pregnant I would not have Givin up on him.
darbyakeep45
by Darby on Oct. 11, 2013 at 11:30 AM

I agree.  My son has Cystic Fibrosis...exactly what little Annie had.

Quoting SnapShotMama:

..... I'm speechless. .. out of all things a baby could have. . that is why annie had to die. my ds has a trisomy. We didn't find out till later but even then while pregnant I would not have Givin up on him.


SnapShotMama
by on Oct. 11, 2013 at 11:37 AM
I've met a few families with a cf kiddo and yes it is hard at times and it sucks to watch them struggle and all. Kids with cf can live a fun and fulfilling life. This women acts as I'd her baby had anchapalthy(sp? Lack of brain and undeveloped skull). Our as if she was going to be born with out lungs! No faith :(


Quoting darbyakeep45:

I agree.  My son has Cystic Fibrosis...exactly what little Annie had.

Quoting SnapShotMama:

..... I'm speechless. .. out of all things a baby could have. . that is why annie had to die. my ds has a trisomy. We didn't find out till later but even then while pregnant I would not have Givin up on him.



mlogsdon
by on Oct. 11, 2013 at 11:49 AM
Death is not better than life. Even a shorter than average and difficult life is still life. She should have had hers.
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jjamom
by Michele on Oct. 11, 2013 at 12:05 PM
1 mom liked this
I have to say that I partially blame the medical community for things like this. They sometimes instill in parents such a fear of what life is like for a child with any number of issues. They paint such a grim picture that i think all the parents end up envisioning is the horrifying worst case scenario of a truly suffering child. They really should, instead, refer those parents to support groups who can tell them firsthand what is really in store. The challenges as well as the victories.

The abortion rate for fetuses found to have Down syndrome is 90%. That number is absolutely heartbreaking to me, because I know firsthand how much joy my son has brought to me and I know how happy he is. His life is very worthy. If some of those 90% were able to see that, I think the number would be far lower.
Bleacheddecay
by Bronze Member on Oct. 11, 2013 at 12:21 PM

I often wonder if I had know how hard my kids would have things in life be if I would have had them or not.

Jenn8604
by Bronze Member on Oct. 11, 2013 at 12:33 PM
1 mom liked this
That's horrible! How can you kill your child because it is considered defective by a DOCTOR? Even with problems a child should be perfect just the way it is to it's mother and she should love it unconditionally. Yes, get help, surgeries if required, but love it for as long as you have it.
For all she knew her son could have died in a car accident on the way home from the hospital after birth. It could've happened. No one is guaranteed another moment. She should have just aborted the second because he can die before she does.
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