# I Know Firsthand the Treatment Options Are Not Adequate

By

Bethany, Taylor Kane

Jan 04, 2022 • 4 min read

_Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023._

Bethany is a co-founder of the Allo Hope Foundation and an [Ambassador](https://www.allstripes.com/blog/allstripes-ambassador-program) for AllStripes’ alloimmunization and HDFN research program. She is committed to ensuring families impacted by alloimmunization and hemolytic disease of the fetus and newborn (HDFN) have all the information they need to get the proper care. Below, she shares how her life has changed since finding out she was positive for anti-Kell antibodies.

Alloimmunization is when a woman creates red cell antibodies after being exposed to a blood type that is different from her own. Usually that exposure happens after a pregnancy or blood transfusion. These antibodies aren’t harmful to the woman, but if she becomes pregnant, they can be harmful to her fetus and cross the placenta during pregnancy, attacking the baby’s red blood cells. This is called hemolytic disease of the fetus and newborn, or HDFN.

We didn’t know anything about this until we got pregnant with our third baby, a little girl. In the routine blood work, the results came back positive for anti-Kell antibodies, which I had never heard of before. Our doctor explained my titer, or amount of antibodies in my blood, was very high (1,024).

I was concerned that the baby would be anemic because my titer was so high, but the maternal-fetal medicine (MFM) team we’d been referred to did not monitor the baby for anemia until later in the pregnancy.

I didn’t know what to do. In our culture you are not supposed to question the doctor. I felt powerless to protect my baby.

Finally, at 17 weeks, I went in for an appointment and said I wasn’t leaving without a scan. It was really hard for me because I hate confrontation. I wondered if I’d been overreacting, but unfortunately, the scan revealed that our daughter was extremely anemic. Fetal anemia can be treatable if it is detected before it becomes severe. Our daughter, Lucy Dair, died a little over a week later at 19 weeks gestation. We had gone in for a procedure and as I was being prepped we watched Lucy’s heart slow down and stop. It was the worst moment of my life.

As we grieved the loss of our daughter, we longed for another baby. I started doing more research and reached out to the doctor who conducted a study on [plasmapheresis](https://www.healthline.com/health/plasmapheresis) and [IVIG](https://www.uptodate.com/contents/intravenous-immune-globulin-ivig-beyond-the-basics) treatments. Thirty minutes later he called me on my cell phone, to discuss my experience and answer all my questions. It really helped us figure out what our next steps were.

We did get pregnant again, with another Kell-positive baby girl, and were able to relocate to another state in order to be treated by this doctor. He was incredible, he was so experienced and knowledgeable. We used [plasmapheresis](https://www.healthline.com/health/plasmapheresis) and [IVIG](https://www.uptodate.com/contents/intravenous-immune-globulin-ivig-beyond-the-basics) treatments and our baby, Nora, had five IUTs before she was born healthy at 38 weeks.

Long story short, we went on to have two more babies using the same treatments, and our doctor recommended another specialist who was closer to home, only four hours away. We now have five living kids.

During my pregnancies, I started a [blog](https://losinglucyandfindinghope.com/) to keep track of my experience. A lot of women started reading and finding it a helpful source of information, and I learned that other women around the world were having very similar experiences. So I teamed up with a few other women I met along the way and we created the [Allo Hope Foundation](https://allohopefoundation.org/) in 2019.

The foundation is mainly focused on providing patient advocacy, support and education for families, as well as research and improved treatment options. I know firsthand that the treatment options available are not adequate. Working with AllStripes, we hope to help move along research because it's desperately needed for this disease.

Something I love about AllStripes is that they give power to the patients. I remember how powerless I felt during my pregnancy with Lucy. AllStripes gives patients access to their own medical records. It would be so helpful to have my medical records from my pregnancies in one place.

Alloimmunization and HDFN completely changed my life. I feel like I was a different person before losing my daughter. I’ve had to learn to live this new life and rebuild from the ground up. My pregnancies after Lucy, even those that had a good outcome, were incredibly traumatic. They involved painful, invasive procedures and lots of risks. They were incredibly taxing emotionally. Right now, I am on antidepressants and medication for anxiety. That all started with these antibodies.

Our experience with HDFN has also helped us understand what is truly important in life and what is worth fighting for. Before Lucy, we did not appreciate life the way we do now.

## We know that every person's story is unique and deserves to be heard.

### Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

### Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

### Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

### Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

### Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

## Together, we can make a difference.

### 1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

### 2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

### 3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

### 4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.