Eliminating Miracles, Conclusion

Miles and Rory

I realize that not everyone’s story ends as mine did.  Some children are born with challenges that my daughter does not have, like my son, who has cerebral palsy.  When I look at him, though, I don’t see a condition.  I see a strong little boy who has overcome obstacles.

One of the special things about having him in our lives is getting to witness miracles.  When he was born, we did not know what his long-term prognosis would be.  There were a lot of things that could have gone wrong.  As it turns out, he has been seizure-free since he was six months old and the only muscle weakness that he has is from the ankle down on one of his legs.  His physical therapist told me that he is the only child with cerebral palsy that she has worked with whose hand on the affected side of the body was not impacted along with his leg.  After what we’ve experienced with him, it seems a little silly that I was afraid to have a child with a different sort of challenge.  What can I say; I am still a work in progress.

Our daughter is a miracle as well.  None of the doctors ever could explain to us why my bloodwork came out the way it did, why my placenta was so unhealthy, why my amnion and chorion fused so late in the pregnancy.  The fact that I had the chorion amnion separation at all is a bit of a mystery, as it doesn’t usually occur spontaneously, but after an invasive procedure, such as an amnio.  A pregnancy is considered at high risk for Down syndrome if the chances are calculated to be 1 in 200.   My results were 1 in 12.  Yet, after all of that, she is completely healthy.

I would never discount the feelings of a parent who has watched their child suffer.  What my own experience has taught me, though, is that there are things that we cannot control, and that is OK.  When I was pregnant with my son, my co-workers teased me about how careful I was about what I put in my body or allowed myself to be exposed to.  In the end, none of it mattered.  The doctor didn’t realize that the cord was wrapped around his neck until it was too late.  That’s not the end of his story, though.  God has a purpose for his life.  He is here for a reason.

Prenatal testing is not perfect.  I am not the first person to be told that my child would likely have a condition that she did not end up having.  I can’t imagine how it must feel to hear one of those stories, if you have aborted your child on the advice of your doctor after a prenatal diagnosis.  I often think of my former co-worker who was pushed into an abortion.  She wanted to wait and hope.  She should have been allowed to do that.

If you give up hope because your doctor thinks there is something wrong with your unborn baby, you might miss hearing the doctor say, “I don’t know what happened, but we were wrong.”  You might miss the moment when a doctor or therapist says, “I didn’t think your child would ever be able to do that.”  Or, you might miss the opportunity to enjoy a radiant smile like I saw on the children at the train station.

You will not have eliminated a potential problem.  You may have just eliminated the chance to experience a miracle firsthand.

 

Read Eliminating Miracles, Part One.

Eliminating Miracles, Part Three

Rory newborn

Two weeks later, my husband and I went in for another ultrasound.  We’d been praying that the placenta would move up to the proper position as my uterus expanded and also that the amnion and chorion layers of the amniotic sac would fuse as they were supposed to.  However, the perinatologist informed us that neither of those things had happened and he didn’t believe that they would at this point in the pregnancy.  Not only that, but because of where the placenta was located and the limited space in the sac with the separation between the layers, the baby’s growth was very poor.  She was much smaller than she should be and had not made any gains since the last ultrasound.

“When you come for your next ultrasound,” he told us, “be prepared that the baby may have passed away.”

I looked at him and said, “OK.”  He looked as though he thought I didn’t understand him.  It wasn’t that; I just still had that peace in my heart.  I knew that my daughter would be OK.

Three weeks later, we went for the next ultrasound, and the doctor just kept looking very carefully at the screen, not saying a word.  Finally, he told us, “I have good news for you.  The amnion and chorion have finally fused and the baby has grown.”

“I thought you said that wasn’t going to happen,” replied my husband.

“I didn’t think it would.  I can’t explain it,” was the doctor’s response.  He went on to tell us that he didn’t think that our baby had Down syndrome.  He couldn’t guarantee it; but at that point in the pregnancy, there are usually clear signs that he would be able to see on an ultrasound, and they weren’t there.

Very shortly after this, I woke up one morning and discovered that I was bleeding.  I went right in for an emergency ultrasound and the doctor had me admitted to the hospital that day, on bed rest.  My little girl was not due for another 10 weeks.  For about a month, I was in the hospital.  At first, I was allowed to get up to shower or use the bathroom.  However, one morning when I woke up and got out of bed, I suddenly felt a strange sensation, as though the baby was coming out.  I froze and hit the button to call the nurse.  She poked her head in the room to ask what I needed, and upon taking one look at me, turned around and yelled down the hall, “Help!  Help!  She’s bleeding!”

The next thing I knew, a team of people had lifted me back in bed and were hooking up a monitor around my belly.  I heard a thumping noise as my nurse gripped my hand, “That’s your baby’s heartbeat.  She’s OK.”

Then, they told me that I’d passed a very large blood clot.  There was no more getting up for me, for any reason.

They were trying to keep me pregnant for as long as possible, but because I still had a placenta previa, a C-section was necessary and would have to be done before I began having contractions, as there was a danger that the placenta would either rupture and cause me a dangerous amount of blood loss, or it would deliver before the baby, leaving her without any source of oxygen.  They day finally came when they decided that we couldn’t wait any longer.  The baby had stopped growing and was no longer urinating, meaning that the placenta was failing to provide her with nutrition.  An emergency C-section was performed that day.

On July 28, 2011, my fourth child was delivered, six weeks early.  She weighed 3 lbs, 4 oz and was 15” long.  She was tiny, but she was perfect.

 

Read Eliminating Miracles, Conclusion.

Eliminating Miracles, Part Two

Eliminating Miracles 2 Graphic

My doctor wanted to know if I wanted to have an amniocentesis.  I told him that we did not want any invasive testing because of the risk to the baby and the fact that the results would not change whether I would carry the pregnancy to term.

The doctors decided that I should have ultrasounds every 3 weeks for the remainder of my pregnancy.  The perinatologist who reviewed the results of the ultrasounds was baffled by our unwillingness to have an amnio.  He told me that the risk of miscarriage as a result of the test was very low, but if my child had Down syndrome, she would never go to school, have a job, or live on her own.  She would die at an early age and likely have health complications.  He seemed to use the ultrasounds as a way to look for problems that weren’t there; for instance, telling me that her limbs appeared to be shortened and that the bridge of her nose was too small, which could be signs of DS.  He said that her heart appeared OK, but we might discover a problem with it later, when she was larger and more detail could be seen.  We finally asked our OB/GYN to tell him to stop pressuring us, as we felt our wishes weren’t being respected.

At my 20-week ultrasound, it was discovered that I also had a placenta previa and a rare condition called an amnion chorion separation.  My doctor had told me not to google my conditions, but I did.  That was a mistake.  I found out that most amnion chorion separations accompany a chromosomal abnormality.  I read that the condition also makes an amnio much more dangerous.  I later asked one of my perinatologists about this, and he confirmed that had we done the test, my water would have broken and my baby would have died.

I wish I could say that I was completely trusting God at that point.  I wasn’t.  I had chosen to walk in obedience, but I was afraid of what was going to happen and whether I could handle whatever He was going to give me.  I felt that the amnion chorion separation was confirmation that my baby would have DS.  One day, we took my toddler on an Easter train ride, and while we were at the station that day, I saw two children with Down syndrome – a little blond boy, walking with his parents, and an infant girl, being held by her mother aboard the train.  They were beautiful.  Their smiles radiated joy.  I realized how ridiculous it was to fear that my child might be like them.  These children were gifts from God.

Not long after that, I went on a women’s retreat with my church.  While I was there, able to have some quiet time away from my day-to-day responsibilities, I felt God clearly speaking to my heart.  He gave me this verse:  “Thus says the Lord to you: ‘Do not be afraid nor dismayed because of this great multitude, for the battle is not yours, but God’s.” – 2 Chronicles 20:15.  I felt peace for the first time during my pregnancy.  I knew that He was telling me that He would take care of my baby, but that there was nothing that I could do but trust Him and leave her in His loving hands.  The timing of that moment was perfect, but it wasn’t long before that peace in my heart would be tested.

 

Read Eliminating Miracles, Part Three.

Eliminating Miracles, Part One

Rory ultrasound

Recently, there’s been a lot of talk about the CBS report that appeared to be lauding Iceland’s high rate of abortion of babies with Down syndrome.  Reading about it made me reflect on my own unique experiences with prenatal testing.

Years ago, I worked at an exclusive, boutique investment firm.  I sometimes wondered why they had hired me, as nearly everyone that worked there looked like they had walked out of the pages of a magazine – beautiful, well-dressed and an attitude to match.  The gorgeous receptionist complimented me on my nail polish one day, and when asking if I’d just had a manicure, was astonished and amused when I explained that I had painted them myself.

There was one woman in accounting who used go around the office, handing out the paychecks, who was a ray of light in an otherwise stuffy environment.  She was also pretty, but had a down-to-earth attitude, greeting everyone with a smile and a joke.  When she was expecting her first child, some prenatal testing her doctor administered revealed that her child was likely to be severely disabled.  As a result, she was advised to terminate.  However, she wanted to hold out hope that the doctors were wrong and things would turn out better than expected.  So, her doctors went behind her back and convinced her husband that they were right.  Then, they ganged up on her and told her it would be cruel to her child to continue the pregnancy; that she would just be causing the child suffering.

After the abortion, she was vastly changed.  She walked around the office quietly, hair in her face, dark circles under her eyes.  It looked like the joy had been sucked right out of her.  I felt so sorry for her.

Years later, when I was expecting my third child, I remembered her story and determined to be cautious about what prenatal testing I would agree to.  I was very young when my first two children were born, so I was considered low-risk at that time.  My OB/GYN told me that because I would be over 35 at my son’s birth, that a test called a first trimester screen was not optional.  Hearing that it wasn’t invasive, we agreed to it, but decided that if it was suggested that we have an amniocentesis done to confirm or deny a disability definitively, that we would reject it.  We didn’t want to give the doctor any reason to pressure us into an abortion, since that wasn’t an option for us.

Luckily, the screen results came back normal and six months later, our healthy baby boy was born . . .his face gray, with the umbilical cord wrapped around his neck.  He started having seizures shortly after, and an MRI confirmed that he’d had a stroke.  He has cerebral palsy as a result.

Sixteen months later, we discovered we were expecting another baby.  Because our first trimester screen had gone fine before, we submitted to it again without concern.  However, the next morning, I received a call from my doctor informing me that the results of my blood work looked bad – really bad.  There was a 1 in 12 chance that my child would be born with Down syndrome.

 

Read Eliminating Miracles, Part Two.