Sunday, May 13, 2007

We started Mother's Day weekend with the third-annual Preeclampsia Foundation Walk-a-thon in Davenport on Saturday morning. This event happens in a number of cities around the country, and our local organizers are the parents of Shelley Bridgewater, who died from HELLP Syndrome a few days before Will died. Her daughter Haley survived despite her premature birth and leads the walk each year (in her wagon.)

This year I was asked to share my story at the beginning of the walk. In the interest of brevity, I usually leave out most of the details of my illness when I talk about Will. This annual event is important to me because it brings together so many women and their families who have suffered the effects of preeclampsia. This is what I said:

Good morning. My name is Mary Kenyon. My husband John and our son Edward are also here with me today. Our son Will is with us as he has been each day of the last two and a half years, in our hearts.

I live in Iowa City and work for the University of Iowa, which means my health care providers are at University of Iowa Hospitals and Clinics. While this may seem an extraneous detail, it’s a key part of my story. I believe this made the difference for me between life and death.

I was 23 weeks pregnant in mid-October 2004 when a sharp and burning pain under my ribcage on the right side woke me in the middle of the night. I’d never had heartburn but associated it with pregnancy, so I thought perhaps my spicy dinner coming back to haunt me. I shuttled between the bedroom and the bathroom that night and finally was comfortable only in an upright position. The next day was Sunday and I thought I was feeling better, but that night the pain returned. I called my doctor’s office the next morning, a Monday and reported my symptoms—sharp pain, vomiting, diarrhea. They asked if I had a headache-No. Blurry vision? No. Excessive swelling? No. In fact, other than these nightly episodes, this was a textbook healthy pregnancy. No morning sickness, no swelling, no problems to speak of.

“Well, it’s probably a stomach virus,” they said. “It’s going around. Lots of our patients have it. Drink plenty of fluid and rest. Call if you don’t feel better.” I stuck to my weak-stomach diet: bananas, rice, applesauce, chicken broth, 7-up, but still spent the rest of the week in that same nocturnal pattern. Each day I called the doctor’s office to report the continuation of my symptoms, but they sounded confident that this was a nasty virus and explained that it takes longer to recover from illness while pregnant because the baby gets first dibs on the available resources. They offered to see me in the office, but the way I was feeling the last thing I wanted was to drag myself there just to be told to go back home to rest.

“If there’s nothing they can do,” I thought, “I’d rather just stay home.”

My regularly scheduled 24-week appointment was the Monday after I’d spent the week home feeling horrible. By the time I got there I was so weak and dehydrated it was difficult to provide the requisite urine sample. The nurse who took my blood pressure tried to remain calm even as her eyes bugged out at the reading and she instructed me to lay down on my side. My doctor came in and explained that the protein and blood pressure indicated danger and that she wanted to order some blood tests before deciding on a course of action. She said I could stay at the hospital to wait for the results or go home and she’d call me later. I couldn’t face another night like those I’d endured the past week so I said I’d rather be at the hospital where they could take care of me. The clinic was closing for the afternoon so they took me to Labor and Delivery where I could lay down and wait for John to come after work.

We were totally unprepared for the doctor’s words when she came with the lab results: You have severe preeclampsia and HELLP Syndrome. We will have to deliver your baby within the next 24 hours. I had heard of preeclampsia but thought the treatment was typically bedrest. I had never heard of HELLP Syndrome. It would be weeks before I fully understood how serious it was and that it might have killed me. In fact, I didn’t really understand until I read the Quad City Times story about Shelley the following February. At that moment I had only one thought, and clutching John's hand with tears streaming down my face, I struggled to voice it: "Is the baby viable yet?" Yes, we were told, but it will not be easy. University Hospitals neonatologists have a 60 to 70 percent success rate with 24-week premies, but still the longer the pregnancy can be prolonged the better. Each day of development in the womb is worth two outside, so even a matter of hours could make a difference for the baby we did not yet know but would soon love with every fiber of our being.

I was given a steroid shot to help his lungs mature and we hoped for enough time for the second shot 24 hours later. They started a magnesium sulfate drip and inserted a catheter. When I was all connected and back in bed, my doctor tried to further explain what was going on. She told us that HELLP stood for hemolysis, elevated liver enzymes and low platelets. She said my body was in a way rejecting the placenta and that the only way to reverse that was to deliver the baby, thus removing the placenta. Normally a jovial and energetic person, she was calm and direct in these discussions. But she did not say, “If we’re not vigilant you could die.” I know she was thinking it though, because later that night when my parents arrived from Chicago that’s what she told them: Your daughter could die. My mother is still haunted by this.

We did make it long enough for that second steroid shot, but not much longer. About 28 hours after I was admitted, our son Will was born by emergency C-section on October 26, 2004. He weighed 1 pound 2 ½ ounces and was 10 ½ inches long. His time in the womb had been cut short by 15 ½ weeks. We heard a single cry before he was intubated and rushed to the Neonatal Intensive Care Unit, where he would fight for his life every day of the next 12 weeks. Because of the magnesium sulfate, I was not allowed out of bed to go see him for 24 hours after my surgery. I counted down the minutes and demanded to be taken to him as soon as the second hand swept past the 12. But I was not out of the woods yet myself. I briefly passed out at Will’s bedside and woke up to a flurry of concern over how to get me out of the NICU and back to bed as quickly as possible.

I was lucky not to have any complications in my own recovery. I was very weak and tired and it took all my strength to make it from the parking lot to Will’s room in the NICU where I would sit and watch him for hours, holding his hand when I could, allowed to help with only the simplest tasks like diaper changing and taking his temperature. It was December before I was able to make it though a whole day without an afternoon nap.

Will faced enormous challenges as a result of his extreme premature birth. He fought through infections, a heart defect and corrective surgery, the constant pounding of the high frequency ventilator shaking his lungs to keep them open. His obvious determination to overcome the odds against him stole the hearts of everyone who came in contact with him, even the briefest encounter. He lived for 12 weeks and four days, but finally faced more than he could bear and died on January 22, 2005. Down the hall, unbeknown to us, little Haley was growing stronger despite having lost her mother just a few days earlier.

As a mother you’re supposed to protect your children and I did all I could at Will’s bedside, all the while knowing that HELLP had robbed me of my ability to provide the most basic shelter from harm: a full gestation. Nothing I did caused it. Nothing the doctors did could have changed it, even if they had recognized it sooner, despite my “atypical” presentation much earlier than in most cases and lacking many of the telltale symptoms.

The symptoms of preeclampsia have been observed for more than 2,000 years since the time of the ancient Greeks. It was defined as a distinct syndrome in the 1920s. It is the leading cause of both premature birth and maternal morbidity and yet there still is no preventive or curative treatment. This is our third year walking for the Preeclampsia Foundation, and we are so grateful to John and Brenda and the rest of the organizers for their commitment to education and awareness of this silent killer. We can’t wait another 2,000 years for the answers.

About four months after Will’s death, we discovered to our great surprise that I was pregnant again. The following months were full of anticipation and anxiety. I gave myself shots of heparin, a blood thinner, twice a day, though there was no way to know if that would avert another onset of symptoms. Starting at 24 weeks I saw my OB every week and when my blood pressure went up at 35 weeks, she did not hesitate a moment in admitting me to the hospital for further tests and monitoring. Edward was born on Christmas Day 2005, five weeks early but strong and healthy, the best present we ever could have received. Sent from heaven, from Will.


Anonymous Anonymous said...

Absolutely moving and touching. God bless all three of you and Will in heaven!

8:22 AM  
Anonymous Anonymous said...

I continue to be amazed by your strength and courage. God bless all of you and thank you for sharing Edward with us.

7:14 PM  
Blogger Scrappinnana said...

What a wonderful speech. I have followed your story since little Will was newborn. I am a foster mom and right now I have a 7 month old little boy who was born at 25 weeks in October 2006 and he left the hospital on January 21, 2007 and was put right in Foster care. We got him on March 23, 2007 and we were his 4th placement. As I sat here reading your speech and holding this precious little man I can only shed tears for little Will who has a mommy and daddy who would have given their lives if they could for him and this little guy we have now doesn't...some how it just doesn't seem right. I am almost 50 years old so I know that all things happen for a reason but sometimes you sure have to wonder why. I know that Will completed his mission here on earth in the time he was here and I also know that our little guy is here for a reason even if that reason is only so we can love him. Bless you for your strength and courage and for letting all of us strangers learn from your heartaches and joy. And for allowing us to love Will and get to know Edward. I keep checking your blog from time to time and am waiting to hear that you are expecting little girl would round your family nicely. God Bless

3:24 PM  
Blogger This isn't going to plan! said...

Thank you for sharing your story

8:24 AM  

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