The Weekly Newsletter for Heart of Houston Birth and Wellness Families and Friends
Happy Monday dear friends. How was your weekend? Were you able to get some rest? Maybe a little sunshine? Maybe a LOT of sunshine? Last week was quiet at the birth center, at least as far as birthing goes. We did have great turnouts for the in-person postpartum circle and Latch Clinic over zoom. One of our favorite HOH families is moving away so group was a good chance to say our goodbyes. We've been so privileged to get to know Kelli and Davi over the last year and a half and we will miss their presence at our events and support groups. Yesterday also happen to be Davi's first birthday and he celebrated with his HOH friends. Boa viagem, que tudo corra muito bem na mudança. Vamos ficar com saudades! We hope to see you all soon!
Best of Luck to You!
Earlier this month I did something I never thought I'd do. I submitted an abstract for the Black Maternal Mental Health Summit sponsored by The Shades of Blue Project and UTHealth-School of Public Health. (EEEP!) I hope to present the Whole Heart Collective model as a framework for improving postpartum outcomes by incorporating community participation and peer support groups throughout pregnancy and postpartum.
Each week I spend time with families listening to their struggles and triumphs but my favorite part is watching their peers cheer them on, give hugs, or just show up in solidarity and hold space for one another. But more than that, I really believe that the building of community during a time of enormous change can, and does, normalize all the highs and lows becoming a parent can bring. My dream is to bring this model of care to underserved communities that aren't privy to this type of whole-person care and instead are inadvertently participants of the current medical model of, " Here is your baby, best of luck to you!" Our species has survived this long because of our innate desire for community. Parenthood is a team sport and no one should be left on the sidelines. lo
Back in early 2016, I had just had a baby and I was slowly getting back to doula work. I reduced my workload from 5-7 births a month to 2-3. I didn't want to be away from my baby much so I was very careful about the clients I took on. I knew that I shouldn't take on families that needed a ton of support because I myself was still learning to be a parent. I received a call from a couple looking for support for the birth of their second child and they had been given my name by the midwives at Texas Children's Pavilion for Women. I was accustomed to doing interviews at a local Starbucks but this couple asked if I would come to their home because they had a medically fragile child. I had no idea that I was walking into the home of folks who would become like family to me. Even if they hadn't hired me as their doula I'm pretty sure we'd still be friends.
Holly and Todd McDonald welcomed me into their home and asked that I remove my shoes and wash my hands. The living room looked like a hospital room complete with a hospital bed and noisy equipment. In the bed was a small, squishy, and oh-so-beautiful two-year-old little girl named Cora. After I washed my hands, I walked over and greeted her, and introduced myself. At this point in her battle, Cora was minimally responsive. Over the next hour or so Holly and Todd educated me about Tay-Sachs Disease, the genetic disorder slowly taking away their active baby girl. Like so many people I had heard of Tay-Sachs but believed it to be a disease that mainly affected Ashkenazi Jews. The screening tools many ob/Gyns used to determine risk for genetic disorders did not flag the McDonald's so no genetic testing was done during Holly's pregnancy. It was a visit to an ophthalmologist that led to a diagnosis.
There are three different types of Tay-Sachs, Classic, Juvenile Onset, and Late Onset. Cora was diagnosed with Classic Tay-Sachs before her first birthday. The Cure Tay-Sachs Foundation describes the disease like this; "Tay-Sachs disease (TSD) is hereditary. A mutation in the Hex-A gene causes the body to have no or very low levels of the Hex-A enzyme. Without Hex-A, cells (especially nerve cells in the brain) are unable to break down fatty waste products. The waste products begin to build up inside the cells causing it to swell and eventually die." The McDonald's began to notice something was not quite right when Cora unexpectedly stopped hitting her developmental milestones. When I met the family, Cora was already in Hospice care and receiving around-the-clock care. Holly and Todd had chosen IVF to conceive their second child in order to ensure their next baby would not suffer as Cora had.
As fate would have it both Mary Love and I attended the birth of Cora's little sister, Tessa. Less than a year after Tessa's birth, I held space with my now dear friends as they said goodbye to sweet Cora. She was just shy of four years old. Since then their family has grown by one more. One very large baby boy named Callum. Holly and Todd continue to advocate for preconception testing for ALL families. CTSF and other organizations working to find cures for genetic diseases recommend, "Carrier testing is best completed before conception. Even if your childbearing years are over, your carrier status can be an extremely important piece of information. If you are a carrier, your close relatives (children, brothers, sisters, cousins, aunts, uncles) should be alerted so they can be tested as well. Tay-Sachs carrier testing is also vital for the close relatives of families with an affected child, regardless of ethnic background, since all parents of children with Tay-Sachs are, by definition, carriers."
I hate that we lost Cora to such a preventable disease. In my dream world, universal genetic screening would be commonplace and covered by all insurances. Until then, we will support the research for a cure and inform folks on the importance of knowing their carrier status prior to conception. We'll also continue to celebrate the life of the sweetest little girl who changed so many lives during her brief time on earth. You can join us in raising funds and awareness by donating to The Cure Tay-Sachs Foundation in Cora's name. On Sunday, May 29th we are hosting a family walk to honor the McDonald family and the gift they shared with the world, Cora. RSVP for the walk here, we'd love to see you!
On May 28th at 10am Bee and her crew are hosting a Saturday yoga class. Not ready to meet in person? It's cool, you can always attend online. Tickets are donation based for HOH clients and Whole Heart Collective Members. This one of those self care opportunities we're always going on about! Did I mention childcare is free? Yep! You're out of excuses, go get your yoga on!
Our friends at Frame dance are putting the final touches on their performance at CAMHLAB. If you missed the family dance party events you still have a chance to see the Frame dancers in action. Tickets are free but you should snag some soon before they are gone. (My family will be there Saturday the 21st if you wanna hang with us!) Find out more and register for tickets here.
Our calendar will look much fuller when we get into our new space!
Postpartum Support Group: Wednesday 5/18 10-12pm on ZOOM
Postpartum Support Group : Thursday 5/19 9:30-11:30 IN PERSON
Pregnancy Peer Circle: Pumping Tips Sunday May 22nd 2-4pm IN PERSON
Momma Strong Postpartum Dos and Don'ts Saturday 6/4th 10-12pm $50 person Must Register
Infant CPR: Saturday 6/11 10-12pm $45 a person. Please read event details to register
Postpartum Support Group: Every Wednesday from 10-12ish and Thursday 9:30-11:30. Zoom link has been sent to all HOH clients and Whole Heart Collective members. Email Jessica if you need more information.
Latch Clinic: Twice a month during Postpartum group. Keep an eye on schedule for specifics
Queer Parent Circle: Second Sunday of every month 3:30-5pm Open to the public!
Birthworkers Circle: Second Sunday of every month starting Jan 2022 time 11am-1:30pm