# Shaye Is Grateful That Social Media Can Connect Her With Others Impacted by HDFN

By

Taylor Kane

May 30, 2021 • 3 min read

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

Shaye was 12 weeks pregnant when she went through the routine lab work that revealed the presence of antibodies in her blood. She would later learn that this was caused by her body’s exposure to red blood cells incompatible with her own — a rare condition known as “maternal alloimmunization.”

“My obgyn has been practicing for 30 years and I was his first case. He didn’t even really know how to describe it to me,” Shaye says.

If a woman has maternal antibodies and becomes pregnant with a fetus with an incompatible blood type, those antibodies can cross the placenta and destroy the fetus’ red blood cells, resulting in a condition called hemolytic disease of the fetus and newborn, or HDFN.

Maternal antibodies are either the result of a prior pregnancy or blood transfusion. In Shaye’s case, she had been pregnant twice before. HDFN may cause symptoms such as anemia, enlarged organs or severe swelling in the fetus. After birth, babies with HDFN may experience anemia, excess bilirubin in the blood, jaundice, low white blood cell count or low platelet count. Some babies are mildly affected while others may face life-threatening complications.

When Shaye learned she and her baby were at risk for complications, she felt confused and devastated. Shaye explains that it was difficult trying to explain alloimmunization and HDFN to her husband, who wasn’t able to attend the appointment with her due to COVID precautions. “When I did get my diagnosis, I spent the first two days in bed crying,” Shaye remembers.

A few weeks after her diagnosis, Shaye met with an HDFN specialist in Atlanta who told her about the [Allo Hope Foundation](https://allohopefoundation.org/), a leading patient advocacy organization for mothers and children impacted by alloimmunization and HDFN. Shaye says she has learned a lot from the Allo Hope Foundation and has been able to meet other mothers who have gone through this journey. They have helped her feel more comfortable and prepared for the birth of her child.

“I love how social media can connect you with people that are going through the same thing and can help you,” she says.

Now, around 26 weeks pregnant, Shaye goes for weekly scans to measure the blood flow to her baby’s brain. Her maternal antibody score hasn’t been rising, but she knows that could change at any moment. She wishes medical professionals knew more about alloimmunization and HDFN, but since the condition is so rare, she has had to do a lot of the work on her own.

“With alloimmunization and HDFN, I’m having to do a lot of the homework and be my child’s advocate.”

Still, she feels very confident in her medical team and is lucky that she now has a specialist that understands the condition very well. She wants to help raise awareness of alloimmunization and HDFN so clinicians understand what tests and scans pregnant mothers need and when.

This is one of the reasons Shaye joined the [AllStripes alloimmunization and HDFN program](/content/program/hdfn/index.html) — to contribute her medical records to research. AllStripes collects all her records on her behalf, and makes them available in a secure account, then de-identifies the records and analyzes the information to drive research forward.

Though Shaye is still waiting for the birth of her baby, she already wants to give back and help her rare community. Thankfully, Shaye has a strong support system by her side. Her journey and perseverance are a testament to how by coming together we can make a difference in each other’s lives.

## 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.

### 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.