FASD: It’s Complicated

Did you know that prenatal alcohol exposures can have 428 comorbidities associated with its affects on the human body?

In 2016, the article “Comorbidity of fetal alcohol spectrum disorder: a systematic review and meta-analysis” https://www.sciencedirect.com/science/article/abs/pii/S0140673615013458

The researchers looked at the literature through a systematic search of studies reporting on the comorbidity and cause of death in individuals with FASD. They used the electronic bibliographic databases, searching for studies published up to July, 2012 including original research published in peer-reviewed journals.

They then made a listing of “all comorbid disease conditions were coded according to the International Classification of Diseases, tenth revision (ICD-10). To estimate the pooled prevalence of comorbid conditions found to co-occur in individuals with FAS.”

I went on a deep dive and bought the article and began the quest to list the ICD-10 codes in order from this research article. The writing required a magnifying glass for me to actually read some of the writing on the article.
But as I was working on this project, I realized just how much knowledge we have learned over the 50 years of Prenatal Alcohol Exposure, but also how much of it was buried in the literature.

Some of us have children either through birth, foster care, adoption, kinship and more that have been caring for some very fragile littles. We learned that these littles can be very very complicated! We would find ourselves at specialists who would look at one system and then find ourselves in a world of revolving doctors and health condition overload. Some of these littles were not growing. They struggled with eating, eliminating, and even survival. Some caregivers would find subtle symptoms and would wonder, I know something is off. Sometimes the medical system would help us piece together the puzzle pieces of what we were seeing.

For some of our kids, we would know that they were prenatally exposed to alcohol. Others would not. But sometimes some parents would be taking their child to doctors for years and they may have seemed to outgrow the fragility of their early years. Many would never get a diagnosis or documentation of prenatal alcohol exposure. FASD for most is hidden. They may have a huge list of medical diagnoses and health problems. While some of our kids would have no diagnoses, we would see our kids not hitting their milestones and struggling with learning. Some of us have become aware that adults with Fetal alcohol exposures have a few or complicated medical issues that pop up in later years. Some of the adults they began to dig deeper into their own histories and stories and push for more answers to advocate for themselves and for those with FASD.

FASD is a whole body disorder.

What peaked my interest, I walked this walk and had to dig deep into the literature to try to figure out how to help my 6 children who are on the FASD spectrum and the families we help. I lost my daughter to complications of her prenatal alcohol exposure at the age of 34. My youngest son has full Fetal Alcohol Syndrome plus plus. While others of my children seem to have “just” the learning and executive function challenges.

FASD can be complicated. No one person is affected the same as another. There are hidden challenges that may be overlooked, or need to be uncovered that can help us understand how to help our loved ones with FASD. By understanding the core issues, we can prevent or prolong, accommodate, intervene and improve qualify of life. We talk about the paradigm shift in looking at what we are seeing what our loved ones are telling us. We just need to dig deeper and connect the mind with the whole body and how things can be affected.

When I meet a new professional with Mac one of the first things they say is that he is complicated. Yes, he is complicated. It is not just as simple as Fetal Alcohol exposures. It tell them he has Fetal Alcohol Syndrome +++.

Overlapping issues.

Genetics, Prematurity, Prenatal exposures to alcohol but also prescribed medications, other neurotoxins, Prenatal and postnatal Trauma.

FASD It’s Complicated. And it’s not as simple as just learning and behavior for some. From the American Academy of Pediatrics, “Prenatal exposure to alcohol can damage the developing fetus and is the leading preventable cause of birth defects and intellectual and neurodevelopmental disabilities.” They talk a lot about diagnosis, learning and how to help the child. But little about the Hidden challenges of FASD and its impact on what we see and we do not see.

As the research learned over the last 50 years, prenatal alcohol affects everyone differently and the spectrum is wide.

I have been digging deeper into my now 50 years of learning about FASD. Half of those years, I had no idea what I was seeing. But those early lessons and clues would be just what I needed when I needed them the most.

I had known that I needed to start writing again and for this years Red Shoes Rock, I have committed to writing and digging deeper into FASD and its hidden challenges.

I am putting on my Red Shoes and a Red Shoes Sticker on my computer with my Red Shoes Rock Anny tumbler at my side and begin 15 weeks of learning more about the hidden challenges of FASD.

Put on your Red Shoes and let’s go on a deep dive into FASD and it’s hidden complications.

For Shay, for Liz, for Mac and for all who have been affected by prenatal alcohol exposure.

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