My name is Jennifer Tabor Johnston and I’m 35 years old as I write this.
Over the past 12 years, I’ve been through just about every obstetric complication on the books, not to mention a few serious pediatric ones through my children.
Essentially, I’ve experienced stillbirth, miscarriage, ectopic pregnancy, infertility, hyperemesis gravidarum, preeclampsia, eclampsia, premature birth, thrombophelia, and multiple C-sections.
I have no regrets about having had these experiences, because I believe I have a unique opportunity to educate, comfort and inspire others through them.
For that reason, I am writing my story.
Note: The following represents a primarily factual side of my tale. The emotional and spiritual aspects are explored further through poetry at
www.journeyverse.blogspot.com
Stillbirth & Undetected Preeclampsia—A Lesson for Every Woman
Like most first-time moms, I was a little naive during my first pregnancy. I wanted to be a "good patient", so I didn't ask too many questions and tried to keep complaints to a minimum. I was in a highly stressful job, so I sometimes missed appointments and had little time to pay attention to my body, let alone pay attention to my baby's movements. I had a wonderful pregnancy guidebook I read faithfully, but unfortunately preeclampsia warning signs were not mentioned until the third trimester, when it is sometimes too late.
At about 24 weeks along, my legs became unusually swollen and painful. My face and hands were also swollen, but I assumed it was due to weight gain. My blood pressure was only minimally elevated, although in comparison to my pre-pregnancy “baseline” level, it was considerably high.
My doctor advised me to get off of my feet (yeah, right).
At 25 weeks I had a feeling that something was not quite right--like my heart was racing and I couldn't catch my breath. I chalked it up to stress and planned to rest up over the upcoming Thanksgiving holiday. I would see my doctor as soon as I got back in town.
That Thanksgiving is a blur. My head was pounding, I was puffed up like a toad, white lights were everywhere, and I just felt generally awful. "Welcome to pregnancy" people said. I doubted this was normal, but kept quiet. When I returned home, I had intense abdominal cramping and flu-like symptoms. I considered a visit to the ER, but decided to wait until morning to call my doctor. The next day I felt completely better so I didn't bother to call--after all, I would see my doctor the next day anyway.
On
December 2, 1999, I went in for my 26 week checkup. There was no heartbeat. I was induced and gave birth the next day to Maria Elizabeth, a tiny, but perfectly formed baby girl. I was told she had a cord stricture with thrombosis and had suffered from intrauterine growth restriction.
Preeclampsia was not discussed until years later when it struck again.
[Needless to say, the warning signs of preeclampsia are subtle and sometimes easily dismissed.
I think the take-away lesson from this portion of my story is that women must take ultimate responsibility for their care during pregnancy.
Every pregnant woman should EDUCATE herself about this potentially fatal disease, LISTEN to her body, TRUST her instincts, and be willing to SPEAK UP about anything that just doesn't seem right. See "Myths" up next
for more info.]
Grief, Infertility & Miscarriage
Grief is a strange animal.
From denial to sobbing, and back to “I’m fine” are all common in the course of the first weeks after a loss.
I blamed myself and my body for being unable to carry my baby to term.
My arms ached for the infant I couldn’t hold, and I even felt Maria’s “phantom kicks.”
Sympathy cards were unacceptable and even made me angry at times, although I would treasure them in the coming months.
Later, it angered me more when everyone around me seemed to have moved on, while I was still stuck in my grief.
My marriage felt the strain, as women and men grieve very differently, and I seemed to have woken up in a place where no one could reach me.
For a while, I would stop eating completely, then I would binge uncontrollably.
The only thing I could think of was getting pregnant again.
It seemed to be the only solution.
Six months after losing Maria, I was prescribed Clomid to help with ovulation.
I had lost a large amount of weight in a short period of time, and my ovaries seemed to have “shut down.”
The Clomid was successful in causing ovulation and pregnancy, but this time the pregnancy was ectopic.
After three weeks of rejoicing over our second pregnancy, finding out at seven weeks that the pregnancy would not continue was like losing Maria all over again.
I was prescribed antidepressants and again set my sights on trying again.
(Methotrexate injections were used to terminate the pregnancy.) This time, we would avoid Clomid and try on our own.
A year passed, one of the darker of my life, but one of priceless spiritual growth. If I had thought that stillbirth was the hardest thing a woman could endure, or that our marriage would ever endure, boy was I wrong. Infertility was like a walking alone through a merciless desert wasteland, with no map, no idea how we'd gotten there, and no end in sight.
I joined a weekly women's bible study at our church, thirsty for God's word. My time with God became my oasis in that desert, as I learned to trust fully in his will, and His timing. The pain and longing didn't stop, but I learned to bring them to Him, and let him comfort me with His love. Finally, in the Fall of 2001, we prayerfully decided to consult an infertility specialist. I was placed on Repronex (follicle stimulating) injections and scheduled for an intrauterine insemination (IUI).
The procedure was successful in conceiving twins, but one was lost very early on.
I carried the other only ten weeks before the heartbeat stopped inexplicably.
(I later learned the loss was likely related to low progesterone.)
By this time I was feeling absolutely numb, and had placed the entire matter in God’s hands.
I was learning the hard way that, try as I might, none of this was within my control. It was all up to Him. We tried the procedure twice more, with no luck.
After the third IUI, I was ready to get off the infertility rollercoaster.
It had been nearly three years of waiting, staring at an empty nursery, and I was done. I began researching international adoption, but my husband wasn't quite ready to take that step. I remember being so frustrated with him, and afraid this entire ordeal was ripping us apart. We decided to plan a trip, just the two of us, to get away from it all. We took a cruise to the Carribean, and had a wonderful time. With all the focus on infertility, I thinkg we had forgotten how to just enjoy eachother and being a couple.
We didn't talk about fertility during the trip, but when we returned home, he asked if I would be willing to try just one more round of IUI before moving forward with adoption.
I reluctantly agreed, but I had no expectations. All I could do was say "Thy will be done." To our great surprise, this time the procedure was successful.
We conceived and I was placed on progesterone supplements in an attempt to prevent another early miscarriage.
A Familiar Feeling Gets A Name--Preeclampsia Strikes Again
I think I held my breath through the first 12 weeks, but when it became apparent that I was actually going to carry this baby, I was suddenly terrified.
How would I prevent another stillbirth?
Still not understanding what had happened to Maria, I felt powerless to prevent it from recurring.
I decided to see a high risk specialist, who examined me at 22 weeks and assured me that everything would be fine.
At 27 weeks, we began to realize I was anything but fine.
I was swelling a lot for this stage, and had been sick with what I thought was the flu for over a week.
I had a sharp pain in my right side and had been vomiting bile (early signs of HELLP syndrome).
My doctor was concerned that my blood pressure was too high and there was protein in my urine (proteinuria).
I was placed on bed rest, diagnosed with preeclampsia, and seen every two days from that point on in the pregnancy.
(I was monitored in the hospital twice a week and in my doctors office twice a week, checking for weight gain, blood pressure, proteinuria, and fetal activity.)
Over the next three weeks, I developed severe headaches and white flashes in my vision.
I remembered experiencing this at the end of my pregnancy with Maria, and the pieces of the puzzle started to come together.
I was worried about losing this baby too, but too sick to do anything but pray and wait.
Each visit showed a little more protein in my urine, and a gradually rising blood pressure.
The baby, at three pounds, did not appear to be growing.
Suddenly, at 31 weeks, I gained over ten pounds of fluid in 48 hours.
My proteinuria was off the chart, and my blood pressure was higher than ever.
I was placed in the hospital and scheduled for a c-section three days later.
Over the next several days, I began having severe chest pains, I was unable to stand or sit up, and my vision limited to black spots.
I was given magnesium to help prevent seizures, and steroids to help the baby’s lungs mature.
Even with these, he would be very premature and would likely need oxygen or a ventilator to help him breathe.
I remember praying for his lungs, then looking over at what looked like mud flowing from my catheter tube, and just praying I would live through this.
Finally, in
February 2003, 8 weeks before his due date, our baby boy was born.
He weighed 3 pounds, 9 ounces, and was pink as a rosebud—no oxygen necessary.
As for myself, I had taken a turn for the worse just minutes before the birth, as preeclampsia gave way to full blown eclampsia. The seizures began on the operating table, and I was given a heavy dose of sedatives as doctors worked feverishly to deliver the baby before eclampsia took its usual course-- stroke, coma, and death. Needless to say, they were successful at stopping the seizures, but it would take several months for my blood pressure, kidney function and fluid levels to return to normal.
Neonatal Intensive Care—A New Mom’s Nightmare
Aside from recovering from a c-section, and eclampsia, I was now also nursing a baby in the Neonatal Intensive Care Unit.
Our baby would spend three weeks in the NICU, fed through a nasal gastric tube until just before he came home.
Meanwhile I was pumping every 2-3 hours and driving to the hospital to deliver his milk and hold him when I could.
Having to go home without your baby, and being allowed to see him only during visiting hours is difficult, to say the least.
Waking to an alarm in the wee hours of morning with staples in your belly, to pump bottles for a baby you can't hold-- well there are no words for that.
I was allowed to hold him just once a day at first, for a 30 minute feeding session.
These sessions were designed both for bonding purposes and for Seth to “practice” nursing, although he was actually being fed my milk through the tube in his nose.
In his premature state, he did not have enough body fat to keep himself warm, so the main goal of treatment was to conserve calories and allow him to gain weight.
Any exertion on his part, even just to suck from a breast or bottle, would cause him to lose precious calories and risk losing more weight or become sick, thus the feeding tube.
In the same way, any time he was removed from the incubator for feeding, holding or bathing posed the same risks, as his body burned extra calories in an attempt to keep warm.
Eventually I was allowed to practice nursing him twice a day or more, but these sessions were mostly unsuccessful in terms of nourishment, and amounted to more of a bonding session than anything. I remember crying and wondering if he would ever eat on his own. I had never realized how difficult breastfeeding could be, especially with a neonate. At times like this, it is essential to have a nurse serve as a lactation consultant, providing reassurance and helpful tips. One of the NICU nurses was very helpful to me in that regard and kept me sane during those long weeks. Finally, at 21 days old and weighing four pounds, our baby boy came home.
New Baby and Lots of Shots
To our great surprise, in December of 2005, we conceived with no help from the fertility industry. Needless to say, I was concerned for the baby’s health and my own. I wasn’t satisfied with my OB doctor’s relaxed, wait-and-see approach, so I searched for a specialist. I was very fortunate to find a wonderful doctor who was willing to diagnose and treat me for a thrombophelia (blood clotting disorder) on my history alone, despite the fact that I tested negative for all of the disorders currently known. He explained that new disorders and gene mutations are discovered virtually every year, and he saw no reason to withhold treatment simply because my particular disorder had not yet been identified. The treatment was simple – a shot of Lovenox, a low molecular weight heparin drug (LMWH), every day of the pregnancy. My new doctor felt confident this would prevent any complications, and he was correct. I had no trace of preeclampsia and my baby grew like a weed. After 24 weeks I did kick counts every day and was monitored weekly in the office, and daily with a home blood pressure monitor. Just to be on the safe side, my doctor performed an early c-section at 36 weeks, after an amniocentesis confirmed the baby’s lungs were fully developed. Our second son was born in August of 2006, weighing 6 pounds 5 ounces and in perfect health!
