Hakuna Ma-“tata” [my emphasis] means no worries for the rest of your days!
Have you ever felt like you wanted to trade your genes for better ones after seeing many of your loved ones suffer from breast cancer at a very young age? I have. My mom was diagnosed with breast cancer at age 37, and I lived with the constant worry that the same thing would happen to me. But it took my sisters and I losing our mom at the age of 52 from metastatic breast cancer, and seeing our maternal Grandma and Auntie fight their own battles with cancer, for me to finally feel the push to find out if there was a hereditary link that caused our family’s history of cancer. My primary care doctor gave me a referral to the genetic counseling clinic, and I booked my appointment.
In October 2015, I sat in the clinic waiting for the genetic counselor to call me back. I was a bit nervous after filling out the book of paperwork. I thought to myself, wow, I am really here to get tested after learning my grandmother was positive for the BRCA2 mutation. I thought about how it could affect my future ahead if I was also BRCA2 positive. I knew right away that if my sample came back positive that I would go ahead and have prophylactic (preventative) surgeries to reduce my risks of breast cancer.
What is BRCA?
The name “BRCA” is an abbreviation for “BReast CAncer gene.” BRCA1 and BRCA2 are two different genes that have been found to impact a person’s chances of developing breast cancer.
Two weeks went by, and finally I got the long-awaited phone call from my genetic counselor. She asked if I would like the results over the phone. I said “of course, I would like to know right now,” and that’s when she told me: “you tested positive for the same genetic mutation your maternal grandma had.” This means that in order for me to have inherited the mutation, my mom must have also been positive for BRCA2. Right away I shared the news with my family and close friends. I made more doctor’s appointments with BRCA specialists. They developed a surveillance plan in which they would see me every three months. Should I get cancer, they would likely catch it early. I then started my search to find surgeons who I personally connected with to do my mastectomy surgery. I needed a general surgeon and a plastic surgeon. Once I found the perfect surgeons, we booked my surgery.
March 1, 2017 was surgery day. I had elected non–nipple sparing bilateral mastectomy with expander placement. During the first surgery, the surgeons removed all the tissue they could, to reduce my risks from 87% down to less than 5%. Expander placement is called delayed reconstruction. I knew I would have another surgery just a few months later, once the area was expanded sufficiently.
On July 21, 2017, I had my exchange surgery. It was an outpatient surgery, in which they used my initial incisions to reopen me, take the expanders out, and put my silicone implants in. Once that was done, my husband and I were finally ready to start our own family.
We began trying to conceive in July of 2018. After a month, we had a spontaneous pregnancy! Six weeks later, we received the news that our baby hadn’t developed a heartbeat, and that the pregnancy wasn’t viable. We continued to try for the next eight months but had no luck. We reached out to fertility doctors, and they figured out that PCOS was the problem causing our infertility. We began treatment, but after a cycle of fertility medication, I developed an ovarian cyst, and I needed to have surgery. But, within a month we were pregnant with our rainbow baby boy D.C.! We were over the moon with joy.
The pregnancy went smoothly but during a few of my prenatal appointments, I would have a nurse or doctor not read my chart and ask me if I planned to breastfeed. It was so hard to understand why every mom was automatically assumed to be breastfeeding and even harder to politely tell them I plan to formula feed because I had a double mastectomy.
Throughout my pregnancy, I had several people make rude and judgemental remarks, like “how could you not give your child breast milk when it’s what’s best for them?” It was difficult to comprehend why mothers are judged by the way their baby is fed.
After reading infant feeding stories of other Previvors I decided to make this sign —similar to a Breast Cancer Survivors sign—that clearly says that I cannot breastfeed, and that my hospital room was a “no-breastfeeding zone.” I wanted our first delivery experience to be positive and not have to explain anymore why I wasn’t breastfeeding.
I wanted our first delivery experience to be positive and not have to explain anymore why I wasn’t breastfeeding.
On March 9th 2020 at 4 am, we were admitted to the hospital after my water had broken at home. Once we got into our room, my husband hung the sign above the hospital bed. Many nurses, doctors, residents, and midwives loved the sign and offered their support. The pediatrician said, “sister, this is so true!!! He will be just fine and formula won’t affect his future ahead.” She was also personally touched by the sign, as she was one year out of breast cancer treatment. My confidence as a new mother soared from the positive support I received.
Once we got into our room, my husband hung the sign above the hospital bed.
Our baby was born at 8:07 pm weighing in at 7 lb 12 oz and 20 in. tall. He is absolutely perfect! My baby is thriving on miracle milk and all of our love. He is one happy little man and we are so in LOVE.
The Fed Is Best community has been supporting me and thousands of other mothers who have no real place for support and I am so grateful for that.
HOW YOU CAN SUPPORT FED IS BEST
There are many ways you can support the mission of the Fed is Best Foundation. Please consider contributing in the following ways:
- Join us in any of the Fed is Best volunteer and advocacy, groups. Click here to join our health care professionals group. We have: FIBF Advocacy Group, Research Group, Volunteer Group, Editing Group, Social Media Group, Legal Group, Marketing Group, Perinatal Mental Health Advocacy Group, Private Infant Feeding Support Group, Global Advocacy Group, and Fundraising Group. Please send an email to Jody@fedisbest.org if you are interested in joining any of our volunteer groups.
- If you need infant feeding support, we have a private support group– Join us here.
- If you or your baby were harmed from complications of insufficient breastfeeding please send a message to contact@fedisbest.org
- Make a donation to the Fed is Best Foundation. We are using funds from donations to cover the cost of our website, our social media ads, our printing and mailing costs to reach health providers and hospitals. We do not accept donations from breast- or formula-feeding companies and 100% of your donations go toward these operational costs. All the work of the Foundation is achieved via the pro bono and volunteer work of its supporters.
- Sign our petition! Help us reach our policymakers, and drive change at a global level. Help us stand up for the lives of millions of infants who deserve a fighting chance. Sign the Fed is Best Petition at Change.org today, and share it with others.
- Share the stories and the message of the Fed is Best Foundation through word-of-mouth, by posting on your social media page and by sending our FREE infant feeding educational resources to expectant moms that you know. Share the Fed is Best campaign letter with everyone you know.
- Write a letter to your health providers and hospitals about the Fed is Best Foundation. Write to them about feeding complications your child may have experienced.
- Print out our letter to obstetric providers and mail them to your local obstetricians, midwives, family practitioners who provide obstetric care and hospitals.
- Write your local elected officials about what is happening to newborn babies in hospitals and ask for the legal protection of newborn babies from underfeeding and of mother’s rights to honest informed consent on the risks of insufficient feeding of breastfed babies.
- Send us your stories. Share with us your successes, your struggles and everything in between. Every story saves another child from experiencing the same and teaches another mom how to safely feed her baby. Every voice contributes to change.
- Send us messages of support. We work every single day to make infant feeding safe and supportive of every mother and child. Your messages of support keep us all going.
- Shop at Amazon Smile and Amazon donates to Fed Is Best Foundation.
Or simply send us a message to find out how you can help make a difference with new ideas!
For any urgent messages or questions about infant feeding, please do not leave a message on this page as it will not get to us immediately. Instead, please email christie@fedisbest.org.
Thank you and we look forward to hearing from you!
Stories and resources:
https://www.littlethings.com/no-breastfeeding-zone-sign/4
https://www.thepatientstory.com/cancers/breast-cancer/brca-2-previvor-erika-stallings
https://www.parents.com/news/cancer-survivor-posts-no-breastfeeding-zone-in-hospital-room-to-prevent-criticism
