Leah Yetzer, 30, was 37 weeks pregnant with twin boys in 2009 when doctors discovered she’d developed HELLP syndrome, a rare but serious condition that occurs during pregnancy or just after delivery. HELLP reduces red blood cells and increases liver enzymes. Leah was airlifted to UVA, where she had a liver transplant that saved her life. Leah, who lives in Blacksburg, shared her story with us.
In May of 2009 I experienced a tragic sequence of events that led to my life almost ending at 27 years of age. I was 37 weeks pregnant with twin boys and I loved almost every week of it. But in my 36th week I felt incredible discomfort throughout my body, especially in the abdomen area, as well as headaches, swelling in my feet and fatigue. This was to be expected, I thought, given my condition and that I was carrying over 12 pounds of extra weight on my small 5-foot-2-inch frame.
I was never advised to be on bed rest and was told by my primary obstetrician in Blacksburg that non-stress tests, which monitored my contractions and their effect on my boys’ heart rates twice a week for 2 hours starting at 32 weeks, were a waste of my time. My husband and I trusted the OB’s knowledge and discontinued those tests (recommended by a previous OB seen at the same establishment) after one week. We then trusted his knowledge when we were sent back home on a Monday with a prescription for muscle relaxers, despite how I felt toward my 36th week — that it was time and my body could not handle anymore. We were told that an induction would not be possible with my doctor until at least two days later, a Wednesday, when I would be in my 37th week.
Emergency C-Section and a Flight to UVA
So we waited, and I began to feel even worse. We went in on our scheduled time on that Wednesday and the nurses were alarmed at how I looked. We went in prepared to try a natural birth, but after the initial exam they realized that my contractions were negatively affecting my boys’ heart rates so much so that I had to have an emergency C- section.
Following my Cesarean at 9:48 a.m., I was taken back to the birthing room we had been assigned and I was barely able to keep my eyes open to receive my newborn children.
My family was told that I would start to improve once my body realized that I was no longer pregnant. Meanwhile, as the day went on, my skin was turning more and more yellow and my heart rate was dropping. It was not until early in the morning of the next day that I was transferred to the ICU for more intensive care.
Everyone was scared and no one seemed to know how to treat what was happening to me. So I was flown by helicopter to UVA, where they spent the next two days stabilizing me and treating the tremendous blood loss I experienced from an internal bleeding site in my abdomen. During a very lengthy surgical procedure, a UVA surgeon refused to give up and tried one last area. It was there that they were amazingly able to find the cut on my epigastric artery and save me from bleeding to death.
As it turns out, at the end of my pregnancy I experienced HELLP syndrome.
HELLP is a clotting disorder where red blood cells are broken down and platelets are consumed, allowing for excessive bleeding and an inability to clot. It stands for: Hemolytic anemia, Elevated Liver enzymes, and Low Platelet count.
I was completely unaware of this syndrome and have since learned that a blood test can reveal its existence. Luckily, only 0.2 to 0.6 percent of all pregnant women develop this condition. The death toll is only 1 percent since the delivery of the baby is usually the cure.
My case was a unique one where I had an internal source of bleeding that went undetected long enough to cause organ failure, and the most damage was to my liver. I went into the hospital on May 20th to deliver my boys and emerged from UVA 40 days later on June 30th, following kidney dialysis and a liver transplant.
A Liver Transplant and Lessons Learned
Here are the key things I have learned through my experience, which got me through. I hope they can benefit you as well.
I was told that if I had not been a healthy eater and maintained a steady exercise routine (as much as my excess weight and precious cargo would allow), I would not have overcome my condition perhaps at all, but certainly not with as much success and in as short of a time. It is so easy to want to be lazy, especially during pregnancy, but your body is an amazing thing and when treated with respect and proper care, it can overcome even severe trauma with resiliency.
I also learned that there are some incredible surgeons out there. UVA’s surgeons were able to perform not just a conventional liver transplant, but they had enough confidence in my liver and their abilities to perform an auxiliary transplant. This involved taking a part of the transplant liver and piggy-backing it to my native liver rather than replacing mine with the transplanted one. It is a fascinating concept that is still relatively new and is mostly performed on children.
This auxiliary transplant has provided me with the opportunity to get my liver back now that it has been stabilized and strengthened with time and they have slowly been weaning me off of immunosuppressants. Now, two years and three months later, my transplanted liver is a fraction of the size it was and my liver is practically back to its normal size. I have just been told that in a matter of 6 to 9 months I should be weaned off the medicine completely and my native liver will take over and I can live a normal life again without the medication. I can’t begin to express how grateful I am that this was an option and I hope that in the future more people will have this option if their circumstances are conducive.
On the other side of things, I always knew that being an organ donor was important, but I know now first hand just what a miracle it can provide. I hope that this could inspire more people to become donors who are not already. There is a great website, www.organdonor.gov, that can provide a link to register with your state as a donor and get more information.
The third, and most important, thing I learned was that none of this would have been possible without a strong faith and incredible support from others. It is both inspiring and healing to realize just how much people care about you when you are faced with a traumatic situation. I don’t think people realize sometimes just how much their kind words and concern helps.
I was so blessed with strong family support, including an incredible husband, and the prayers of my family and friends, along with a great team of surgeons, doctors and nurses, a great wound care specialist and even the caring receptionists, all of whom would not give up on me.
And here I am now, a mother of two-year-old twin boys and practically back to my normal self, still alive to be there for my family.
Let me leave you with one last thought: Always listen to your body and your instinct. If you ever feel something is not right or should be done differently, trust in yourself and get a second or third opinion. Medical personnel are human and can overlook things and you are ultimately your own ambassador.
UVA is the only comprehensive organ transplant center in Virginia. We perform more than 200 transplants per year.
Find out about liver transplants at UVA and learn more about HELLP syndrome.