As a 15-year-old schoolgirl Lindsey McFarland will always remember the day her mother took her to the doctor because she was worried her daughter hadn’t yet had a period – a symptom her doctor took very seriously. “They suggested I might have a hormone imbalance or perhaps my brain signalling wasn’t working,” says Lindsey, “They even suggested that I could have a brain tumor. I didn’t stop crying the whole time they did the pelvic exam.”
After CT scans, blood work chromosomal tests and an MRI the diagnosis wasn’t life threatening but for Lindsey it was just as shocking. “The doctor explained I had a very short vaginal canal,” she says, “I had also been born without a uterus. The doctor told me that if I wanted to be a mother he suggested that I consider adoption. I was 15 years old!”
After seeing a specialist Paediatric Gynaecologist, Lindsey had a name for her congenital condition – Mayer-Rokitanksy-Kuster-Hauser (MRKH) Syndrome, which affects 1 in 5000 females, characteristically defined by the malformation and underdevelopment of the uterus, cervix and vaginal canal.
“MRKH really altered my identity,” she says, “I became Lindsey who had no uterus. I don’t think people realise that they start looking different at you.” But, her devastating diagnosis was also the beginning of an incredible learning curve. “At the time my grandfather was going through cancer treatment,” says Lindsey, “When I asked Papa ‘how do you cope?’ he told me to try and find your true purpose. His positivity was so very inspiring.”
Over ten years later Lindsey is happily married with three adopted children but in 2011 decided to take another courageous step. After reading about a Swedish Research Team who were exploring the world’s first Uterine Transplant resulting in the first live birth in October 2014, she sent an email to American surgeon, Dr Andreas Tzakis. In September 2015 she became the only patient in America to be selected to undergo the pioneering procedure. Five months later she received a phone call, “We have a donor. Be on standby.”
The surgery which was expected to take seven hours came closer to ten, as Lindsey’s husband slept at the hospital. Uterine Transplants have triggered worldwide discussions among the medical community including high profiled ethical debates due to a number of cited risks involved in the procedure. Was she aware of the risks?
“I was excited and anxious and in total disbelief,” says Lindsey, “But, I have grown up believing, that when it’s my time to go, I will go. My beliefs have taught me there is a purpose and a plan for everything. I also knew I was in the best professional hands and I always felt safe. Never once did I feel like a science experiment.”
After the operation she was admitted to Intensive Care where a biopsy of the ‘new’ uterus showed that it was pink, healthy and receiving good blood flow. This meant she could be discharged to go home, due to take part in a press conference a few days later to discuss the success of the procedure.
“The hospital even arranged a hair and make-up stylist for me to be ‘TV ready’” recalls Lindsey, “There were a lot of people and bright lights. I was pushed in using a wheelchair because I was still recovering and didn’t want to fall on stage.” Following the press conference there were more media interviews. “I noticed I was feeling really tired,” says Lindsey, “As I got up to go to the bathroom, I noticed all my clothes and bandages were covered in blood.”
Due to an infected artery, the blood flow to the uterus had been hugely compromised. This meant it needed to be removed – urgently. “I was crushed but I didn’t cry,’ recalls Lindsey, “I kept thinking ‘I am going to deal with this. I just want to go home. I am proud that I tried but I am done.”
Over the next few weeks it became pubic knowledge that America’s first Uterine Transplant had failed but it is not public knowledge that Lindsey faced further
challenges. On the day she was due to be discharged from hospital she began feeling dizzy and fell in and out of consciousness. Lindsey then goes on to share the moment she considers the most life changing of them all as she recalls, “I was rushed to emergency. I just thought, what is going on?. But I knew, it wasn’t my time.” A burst artery had restricted blood flow to her left leg. If the condition had been caught any later her leg may have needed to be amputated.
Today, Lindsey has, physically, recovered from the ordeal but how has she coped with the emotional trauma? “I think I would probably would have been more heartbroken [if I wasn’t already a mother]’ she says, “I am very blessed to have three boys – I don’t take this lightly – they are my life. However, there are days, even now, I think, they would now be prepping for embryo transfer. But, how amazing that I get to be a mom. We do see other transplants fail and surgeries not work and we see other surgeries be of huge risk but we don’t hold those back from a patients choice.”
Has science fiction become a new reality for the infertile? Now, the ground breaking procedure is set to change the lives of women worldwide, as surgical teams across the globe continue to undertake this cutting-edge procedure, which will change the future of women who suffer from MRKH. This clinical break-through has seen five women deliver healthy babies, with one giving birth twice. Two more pregnancies are ongoing and expected to deliver early summer 2017.
What advice does Lindsey have for other women with her condition? “I am not just my diagnosis,” she says, “I am a person who has hopes and dreams and not just someone who does not have a uterus. Now, I am older I can tell my 16 year old self you are a woman, this diagnosis does not define your womanhood. The inability to carry a child is heartbreaking. Every woman has the choice in how she chooses to build her family. ”
Lindsey continues to live a full and happy life with her three adopted boys and is currently fostering two babies What is next for biological children of their own? “We still have six embryos which were intended for the Uterine Transplant transfer, so we have those should we choose to move forward with surrogacy. My motherhood journey is not quite over – in fact, it will never be over.”
The Global MRKH organisation does not advocate for or against regarding this procedure, however we do believe in choice and Lindsey is a gracious and fierce advocate in joining this mission. A global team of pioneers and patient advocates continue to explore this ground-breaking procedure and as we can see, in spite of complications, the care of the patient, of Lindsey, was always maintained. Our eyes are open wide for what is next for the unique discovery of assisted fertility and may women with MRKH, continue to believe and have hope – as women first, patients second.
With much gratitude to Lindsey, for her honest, humble and courageous voice; a true ambassador for the future of MRKH support and awareness.
With thanks to my dear friend and Editor of this article, Amy Molloy. Without your friendship and brilliant ‘writer’s eye’, I couldn’t do life without you.
With boundless love to the MRKH community.
Co-creator: Global MRKH and Sisters for Love MRKH Foundation (Australia)