From as far back as she can remember, Amber Crumb had always wanted to be a mom.
“From the time I was a child, I would see moms playing with their kids and would think about how that was going to be me someday,” Amber remembers. “So you can imagine how hard it was for me to realize that I might not be able to have that dream come true.”
In 2007 at just 21 years old, Amber began having pain and swelling in her right leg. Within a matter of weeks, the pain became so intense that she could barely walk.
“My doctor told me that I just needed to lose weight,” recalls Amber. “But once I resorted to taking elevators just to move around, I knew that something really bad was happening.”
A trip to a local emergency room revealed that Amber had a blood clot in her lungs along with countless blood clots in her leg. Worse, multiple doctors and tests over the next eight months could not pinpoint an exact diagnosis.
From the time I was a child, I would see moms playing with their kids and would think about how that was going to be me someday.
Says Amber, “No one could believe that I had just suddenly developed blood clots. It was definitely a frustrating time.”
But eventually a diagnosis emerged. In February of 2008, it was determined Amber had a rare disorder known as Antiphospholipid Syndrome, or APS. A disorder of the immune system, APS causes an increased risk of blood clots, specifically in the legs, arms and lungs. Complicating matters further, pregnant women have an increased risk of miscarriage or stillbirth.
Amber remembers, “While I was glad to finally get a diagnosis, no one had a good plan for fixing it. Up to that point, I had too many blood clots to count. A blood thinner wasn’t really regulating them. And because I was getting married and looking forward to starting a family, I was concerned how everything would impact my pregnancy.”
Despite the anticipated challenges, Amber remained optimistic and focused on what she could control and on accomplishing other personal goals, like getting a master’s degree. Thankfully, over the next five years, doctors were able to moderately control the blood clots, and by the time she finished school, Amber received the best news of her life.
“In fall of 2012, I found out I was pregnant and was overjoyed,” says Amber. “I told my family, announced it on Facebook, and did all the exciting things you do when you get that kind of news.”
But like so many people who suffer from APS, Amber’s first pregnancy came with both physical and emotional pain.
“At week 27 of my pregnancy, my world came crashing down,” recalls Amber. “During an ultrasound, the technician couldn’t find my baby’s heartbeat. Even before the doctor could confirm the bad news, I knew my son had passed away.”
The APS-caused blood clots that had hindered Amber for years had also taken the life of her child.
“The agony of leaving the hospital without your child and going home to an empty nursery was the worst feeling of my life. A cancelled baby shower and having to tell family the news was unbearable,” stated Amber.
And unfortunately for Amber, this was only the first of what would be several fertility complications with APS. Although she was able to become pregnant again, Amber then suffered a second miscarriage, which weighed even more heavily on her mental health.
“It was just such an emotional roller coaster. I wanted to be a mom so bad. But frankly, I was really giving up,” says Amber.
Then came a third pregnancy. But once again, Amber’s baby suffered complications, this time a partial placenta abruption. Born at just 19 weeks, Amber was forced to say goodbye just one hour after giving birth. To compound matters, she would go on to have another miscarriage with a fourth pregnancy. The culmination of the many disappointments also had a severe toll on Amber’s marriage, which ended in a divorce in 2018.
When it seemed overcoming APS or being able to have a child was now impossible, Amber went in search of a doctor who could help her in a way no one else could – a doctor who would work harder and be proactive in exploring bold possibilities.
Not long after, she found her answer from Jason Knight, M.D. a rheumatologist at University of Michigan Health. From the moment Amber was placed in Dr. Knight’s care, he set out to find solutions for her like no other physician had tried before.
Ambers remembers, “Meeting Dr. Knight was an incredible feeling. I had gone so long feeling alone, like no one knew anything about my disorder. Here was a man who knew everything, and kept up on the research. He listened and legitimately cared about what happened to me. He was a game changer.”
Not only did Dr. Knight help Amber’s blood clotting to improve, but his commitment arrived at exactly the right time for another big reason. In December of 2018 while in Florida with her boyfriend, Amber learned she was pregnant once again.
With my previous doctors, I always felt like I knew more than them. But with Dr. Knight, it was the first time I felt the doctor was leading the way, so I trusted whatever he told me.
“I went numb, but was excited. And I thought, if anyone can help me, it’s Dr. Knight,” says Amber.
Fortunately, Dr. Knight had a breakthrough idea. He had heard about a clinical trial that showed promising results for women with APS who hoped to become mothers. He was confident Amber would be a good candidate.
“With my previous doctors, I always felt like I knew more than them. But with Dr. Knight, it was the first time I felt the doctor was leading the way, so I trusted whatever he told me,” recalls Amber. “Within days, I was on the trial drug, and by January was back at Michigan Medicine meeting with high-risk pregnancy doctors and other researchers who were carefully monitoring the drug and my pregnancy.”
“Pregnancy loss can be devastating and, although we look for an explanation, too often we are unable to find a cause,” says Mark Chames, M.D., maternal-fetal medicine specialist at Von Voigtlander Women’s Hospital. “In Amber’s case, however, we had a cause, but the usual treatments weren’t helpful and she still experienced stillbirth and miscarriage, which is doubly frustrating. As a provider, I feel fortunate to work at Michigan Medicine where our team of high-risk obstetricians can collaborate with experts like Dr. Knight to help find solutions for our patients who are facing heartbreaking challenges like this.”
Dr. Knight saw Amber monthly during her pregnancy and the maternal-fetal medicine (MFM) team at U-M Health developed a plan to closely monitor Amber and her baby.
At 30 weeks, Amber knew that her baby had a high likelihood of survival as long as she was hyper vigilant and paid attention to the baby’s movements in her womb. On July 27, 2019 at 37 weeks, she was induced at Michigan Medicine, beginning two days of labor.
Although she had seen many previous tragedies, the team at Michigan Medicine was able to finally give Amber the gift of a lifetime.
“My son, Sebastian, was born completely healthy at six pounds and one ounce. The second he was placed on my chest, I couldn’t believe that I finally had my living, breathing, thriving, surviving child. It was the greatest moment of my life. I can honestly say that because of Michigan Medicine, I am a mom,” says Amber.
Today, Amber works as a Behavior Analyst working with individuals with autism. While she will continue to get help for APS, she’s also doing what she loves most – raising her nearly two-year-old son.
“Antiphospholipid syndrome has taken so much from me. It is my hope that bringing more awareness to this will lead to further research and funding. I hope in my lifetime that a cure for APS will be found and won’t affect my son or his children. In the meantime, the main thing I think about is trying to keep up with Sebastian,” says a smiling Amber.
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