Posted on 11/23/2001 12:13:48 PM PST by madprof98
Holiday holds special meaning after family's prayers are answered
At Thanksgiving dinner today, our baby girl will gum her grandma's sweet potato casserole (with marshmallows!) for the first time.
My husband, Steve, and I will give thanks. Thanks for all the simple, adorable baby things Elise does. Thanks that our odyssey as new parents, which began with so much pain, ended in renewed faith and growth. And thanks to God -- for by His grace Elise has been granted not just her life, but her amazing strength and miraculous health.
Encephalocele.
The word sounded foreign and ominous on my tongue. I stared at the medical term, printed neatly in capital letters on my obstetrician's business card. It was just after Christmas last year; happiness and anticipation turned to mind-numbing fear.
Steve also looked frozen as Dr. Alexander Ormond III of Cuyahoga Falls told us that our routine, 20-week ultrasound wasn't quite normal.
In that horrifying moment last December at the doctor's office, all we could comprehend was that our first baby had a potentially deadly birth defect involving the brain. After worrying for more than a year about conceiving, this news was simply unfathomable.
Encephalocele (pronounced en-SEF-uh-lo-seal), a rare neural tube defect related to spina bifida, is a bony defect of the skull through which brain matter protrudes. The condition affects as few as 1 in 10,000 children worldwide. Encephalocele can be related to a lack of folic acid. I had been taking above the minimum daily recommended amount of folic acid well before we conceived. I had been enjoying a healthy pregnancy.
But the ultrasound revealed a small, dimpled sac protruding from the upper back (posterior) area of our child's skull. This sac was made of the meninges, or protective covering of the brain. Whether the sac contained brain tissue was the key to our child's survival.
Encephalocele.
With that word, our world came crashing down, but I clung to hope.
``I refuse to believe this is a tragedy. Our baby is going to make it,'' I told Steve.
We waited over a five-day holiday weekend to see a specialist, who would conduct a higher-resolution ultrasound to confirm whether brain matter was inside our baby's sac.
Steve and I went through a period much like mourning, suffering agonizingly sleepless nights. We prepared a long list of questions about encephalocele. And we turned to prayer.
In the next months, one of the hardest things for me (a reporter always seeking answers) was that there were so few assurances concerning our daughter's health.
I am not patient. Only by leaning on faith would I function.
The day after our baby's diagnosis, I met with my friend, the Rev. Sam Ciccolini of Interval Brotherhood Home.
Pointing to a creche in the IBH chapel, Father Sam compared our family to the Holy Family. He said Mary was frightened about carrying Jesus, but she accepted God's will.
Our baby was God's baby, Father Sam said. We must do all that we could medically for our child, but ultimately, Steve and I must accept God's will.
``Visiting me has been your greatest act of faith,'' he said. He prayed with me, and told me that this would be the greatest blessing of our lives.
Steve and I agreed that no matter what our baby's prognosis, we would give her every possible chance for life. Abortion was never a choice.
As you do not know the path of the wind or how the baby is formed in the mother's womb, so you can not understand the work of God, the maker of all things. -- Ecclesiastes 11:5
Our first encounter with a specialist was a nightmare.
This doctor crushed us. He gave no prognosis for our baby, and added what later proved to be a misdiagnosis of hydrocephalus (excess fluid on the brain), which can cause brain damage.
He had never delivered a child with encephalocele, he said, because all of his patients whose babies had this defect had chosen to terminate their pregnancies.
We learned that our baby had an 89 percent chance of survival if brain tissue did not protrude from the skull. If brain tissue did protrude, the survival rate dropped to 29 percent.
The specialist confirmed by ultrasound that he saw no brain tissue in the sac. But that could worsen at any point. Although he knew we would never consider an abortion, he said: ``If this gets worse, you may want to change your minds.''
We knew we were in the wrong place.
At home later, for the first and only time, I snapped. I stood screaming and crying, all my pain and frustration aimed at this coldhearted doctor. We feared the entire medical community would think we were crazy for trying to save our baby.
Like spina bifida, encephalocele can result in various problems ranging from mild developmental delays to severe disability or death. We found ourselves trying to bargain with God: ``If only our baby isn't severely mentally retarded, we could deal with vision problems or we could deal with seizures.''
Had God called us to nurture a special-needs baby? My father told us that if it took moving into my parents' home and all four of us to care for a disabled child around the clock, we would make it happen.
God gave us strength -- but acceptance wasn't easy.
The same everlasting Father who cares for you today will take care of you tomorrow and every day. Either he will shield you from suffering, or he will give you unfailing strength to bear it. -- St. Francis de Sales
Steve and I prayed aloud as a couple for the first time. We prayed for miracles, and began to see that God works in mysterious and wonderful ways.
A first ``miracle'' occurred when we found a team of doctors at University Hospitals and Rainbow Babies and Children's Hospital in Cleveland. Neurologist Mark Scher and his nurse, Brenda Kidder, were the first to offer hope.
In early January, we visited Scher, perinatologist Dinesh Shah, and neurosurgeon Shenandoah Robinson, who analyzed our baby's brain on an ultrasound.
For three hours, they painstakingly answered questions and confirmed that they saw no brain matter protruding from our child's skull.
They told us our baby's brain and other organs looked normal; that our child did not have hydrocephalus. The encephalocele wasn't likely to grow disproportionately larger and could be surgically repaired after birth.
In fact, Shah said our baby's encephalocele was the best posterior case he had seen in his 20-year career. Among all encephalocele cases, both mild and severe, 40 percent of patients had average intelligence, Scher said.
All three specialists agreed that our child had a very good chance of normal development. For the first time since the original diagnosis, we felt relieved.
Steve and I found ourselves focused only on faith, family and friends. We prayed to remain spiritually centered.
By the fifth month of pregnancy, I was under the care of two OBs -- Ormond for local prenatal checkups and Shah in Cleveland, who would monitor and deliver our baby. Repeated ultrasounds and a fetal MRI confirmed that our baby's birth defect was not worsening.
On Feb. 5, we learned we were having a girl. We named her Elise Catherine.
Although Steve and I worried daily about our daughter's quality of life, ultimately, Elise and I ended up struggling for something much more fundamental -- life itself.
I believe in miracles, not coincidences. Just as God guided our efforts to save our daughter, in the end Elise ended up saving me.
My ankles and feet had been swelling, which both OBs said was normal in pregnancy. In my seventh month, the baby's fetal weight estimate dropped. We didn't know yet that Elise wasn't growing adequately because I had developed a severe form of pre-eclampsia, which was depriving her of nutrition through the placenta.
Then in early March, I started to feel an odd discomfort under the right side of my ribs. Never having been pregnant before, I thought it was normal third-trimester aches.
For one lethargic week, this strange, tight feeling kept me awake at night. I didn't realize my liver was being damaged.
I believe God guided me the day I asked Ormond for an extra ultrasound, seeking affirmation that Elise had grown that week. And I believe God guided Ormond when he suggested I come in five days early and then discovered my pre-eclampsia.
As it turned out, I didn't have five days to wait.
Later, I checked in to University Hospitals. Dr. Michael Gyves, a colleague of Shah, said that I would not be leaving until I had my baby. My own doctor, Shah, was out of town during our emergency.
Within an hour, I learned my condition had worsened to what is called HELLP syndrome. HELLP stands for Hemolysis (breakdown of red blood cells), Elevated Liver, Low Platelets; meaning my blood clotting was less effective and my liver was being damaged. Five percent to 10 percent of pregnant women suffer pre-eclampsia, with 20 percent of those developing the more severe HELLP syndrome.
My platelet level dropped so low that I had to deliver Elise that night -- nine weeks early. Delivery was the only cure for HELLP syndrome.
I cried. My whole body shook. I was terrified that we had no choice but to stack the odds even further against our tiny daughter by forcing her to be born so early.
Meanwhile, we faced the troubling decision of a C-section versus a vaginal birth.
I feared that pressure from vaginal birth would cause Elise's encephalocele to rupture. But Gyves said that a C-section would be risky with my blood clotting problem.
He said he had to save me first in order to save our baby.
``I did not come here to die. I came here to have a baby,'' I told my family.
Father Sam hurried to the hospital in the middle of the night to bless our little family.
``I promise you you're not going to be a widower, OK?'' I said to Steve.
Ultimately, Gyves had to perform an emergency C-section. As I headed to surgery, this verse popped into my head:
``I have walked through the dark valley of death, yet I fear no evil.'' -- Psalm 23
God was comforting me.
I finally surrendered completely to Him. I knew clearly that Elise and I were in His loving hands.
Elise was born at 1:01 p.m. March 16, weighing 2 pounds, 11 ounces, breathing on her own and crying like a kitten.
I lay with my arms strapped to the operating table and peered at my daughter with her tiny, gnomelike face that seemed to hold so many secrets. She was wrapped in a blanket and wore a little knit cap, which a nurse removed to show me her quarter-sized encephalocele, covered in pink skin and surrounded by a full head of dark hair.
Elise's skin looked very red because it was so thin. Her weight was low, even for preemies her age, because of growth retardation from my pre-eclampsia. Loose folds of skin hung on her legs because she had no fat. Parts of her body were still developing, including her nipples, eyelashes and brows.
Elise's biggest challenge was to grow. Her lung problems were minimal, and because her encephalocele was covered by skin, lowering the risk of infection, surgery could wait several months until she was bigger and stronger.
But I was so nauseated from medication that I couldn't enjoy my first short visits with Elise, including her baptism. She lay in an isolette with several small portholes through which we could stroke her.
Even that routine lasted just four days.
Then, Steve noticed that her encephalocele looked deflated and had a drop of fluid on it. Her preemie skin was so thin, the defect had ruptured and was leaking cerobrospinal fluid. Elise had to be operated on that night to avoid brain infection. Our tiny but mighty baby, who had only 3 ounces of blood in her entire body, proved resilient. By the next morning, Elise was off oxygen and wriggling around in her isolette.
Robinson removed a minute amount of brain scar tissue from Elise's sac and determined that Elise had a rare atretic encephalocele, one that -- miraculously -- shrank in on itself.
While Elise remained in NICU, I was just a visitor at her bedside. All I could do for her was to pump breast milk for tube feedings, massage her through her temperature-controlled isolette, and hold her tiny, birdlike body skin-to-skin for a peaceful 30 minutes each day. She needed to conserve calories and gain every little gram she could.
From the start, doctors and nurses said they were in awe of Elise's strength. She rolled over in her isolette her first week, and had advanced sucking abilities for a preemie her age.
``She's a little sparkplug,'' my favorite nurse said.
Early on, our feisty girl called the shots. Elise ripped her feeding tube out dozens of times until we finally decided to let her try oral feedings. From then on, Elise began to nurse and bottle feed in earnest, and her weight took off.
``Your baby had a mind of her own, and you were able to read it,'' her neonatologist said.
Finally, the time came to take Elise off the monitors and bring her home. At just 4 pounds, 5 ounces, she almost disappeared into her clothes. The first time I saw our sweetheart in her carseat, I cried. Our miracle baby was finally coming home after six weeks.
We couldn't stop cuddling her: We needed to make up for lost time.
Our daughter has always been demanding and vocal, for which I'm glad. She also smiles, squeals, laughs, rolls both ways, sits up and grabs and mouths everything she can get her hands on.
At eight months, our chubby Elise weighs more than 14 pounds. Her local pediatrician and the specialists at Rainbow confirm that Elise is a healthy baby whose encephalocele was an isolated problem. She has a bigger soft spot than most children, which might require additional surgery.
Doctors can't be sure that Elise's brain has not been affected. Yet so far, she is meeting all her milestones.
The cause of my pre-eclampsia remains a mystery. In any future pregnancies, I would have a 50 percent chance of developing pre-eclampsia, but just a 5 percent chance of severe HELLP syndrome. We also have a 3 percent chance of having another baby with a neural tube defect.
I will thank you, Lord, for your faithfulness and love, beyond all my hopes and dreams. On the day that I called, you answered; you gave life to the strength of my soul. -- Psalm 138
Steve and I live more deeply and fully now as we watch Elise grow and discover the world.
We have simple dreams for our daughter. We dream of her attending our parish school and loving life with the purity and zeal that only a child can possess.
Steve and I are ordinary people who experienced the extraordinary. We are grateful to our families, our pillars of strength; and our friends, who shared in our sorrows and joys.
As Father Sam said, our ordeal has proved to be the greatest blessing of our lives. We thank God this Thanksgiving Day for answering our prayers so abundantly.
If our story gives just one worried couple hope, saves even one baby from the violence of abortion, then I have done my job in telling it.
Often, I gaze at my daughter's face as she slumbers peacefully, and I reflect on society's ideals of the ``perfect'' baby. They are meaningless and arbitrary.
God created our angel in His image. That's all the perfection I need.
Reporter Kerry Clawson is on maternity leave. She will return to work at the Beacon Journal in early December. However, she can be reached via e-mail at kclawson@thebeaconjournal.com.
Thank you, Lord, for Elise and her story. May it move many to tears, and save many Elises from the abortionist's hand.
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.