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Thriving in the Midst of Chaos: Parenting With Special Needs Kids


Aug 26, 2021

Episode 104: Alexa Bigwarfe's Experience of Twin-To-Twin Transfusion, Infant Loss, and Transformation Through Writing

In this episode, Alexa Bigwarfe discusses her experience with twin-to-twin transfusion syndrome and child loss. During her third pregnancy, she should have been followed as a high risk pregnancy with a maternal fetal medicine doctors, although the OB who was following her did not do her due diligence and missed the twin-to-twin transfusion. At the 12 week scan, her doctor nonchalantly mentioned twin-to-twin, but didn’t seem concerned. The doctor skipped the 16 week ultrasound altogether. At the 20 week ultrasound, they found the transfusion and immediately transferred her to labor and delivery. At the hospital, she saw an MFM, who provided her options for management of the transfusion. She was hospitalized three times during her pregnancy to do an amniocentesis. During her last hospitalization, she was bedridden in the hospital to be monitored for a month. Her twins were born 9.5 weeks early, as she naturally went into labor. Katherine passed away after two days. Her surviving twin was growth restricted in the womb and spent 3 months in the NICU. After the fact, Alexa found that there could have been other treatments provided for her children, but her doctors either didn’t know or didn’t offer those treatments.

The NICU stay was very hard for Alexa because she had to pass the spot where he other daughter passed away. Her other daughter had some touch-and-go moments, but was otherwise lucky in her health that she didn’t have lung, eye, or bowel issues. Meanwhile, Alexa was also caring for a 2 and 4 year old. Milk flow was low due to stress and trauma and Alexa had to pump every 2 hours around the clock to maintain her milk flow. Her daughter had issues with reflux, had trouble with suck-breathe-swallow, and needed a few minor surgeries. She was still a low weight due to feeding difficulties, so she had a g-tube placed. She had a hole in her heart when she was born, and it closed on its own by 18 months.

 

Alexa initially coped by compartmentalizing, and put her grief aside to take care of her other children. Afterward, she coped by using writing, support groups, blogging, Facebook groups, and connecting with other moms.

To write a book, start with an outline. Interview other people who have gone through the process to get other perspectives as well. Spend some time figuring out how you want to publish. Hire someone to do the things you aren’t good at. Get educated on all the different steps.

Write Publish Sell

Chrysalis Press

Purple Butterfly Press

Kat Biggie Press

PublishHer Podcast

Sunshine After The Storm

Women In Publishing

Write Publish Sell Blog

Ditch The Fear And Just Write It

.Workshops

Facebook Group

The Birth Hour

Now I Lay Me Down To Sleep

Return To Zero Movie

Dr. Kiley Hanish

 

 

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Show Music:

Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)

Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)

Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)

 

Hosted by: Jessica Temple and Lewis Temple

 

Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.

Copyright 2021 Jessica Temple