Oh hey there, it's just me...Dawn...🤗 The mom with the special needs child who feels alone and forgotten...(not anymore though) I have decided to stop hiding from the world even though it makes me feel uncomfortable. I am going to lean into these feelings and move past my silly hang-ups 😜💖
Raising a special needs child has been a beautiful disaster... A journey of tremendous growth, compassion, love and kindness.
Let's raise some awareness together 💞🙏💞🙏
Here are my top 10 Reasons to raise awareness of EA/TEF (Esophageal atresia/tracheoesophageal fistula)
1) Most people haven’t heard of EA/TEF, and that it can be a life threatening condition.
2) About 1/2 of babies born with EA/TEF will have trouble with GERD and require daily medication to control this, which puts them at higher risk of developing other complications.
3) Children with EA/TEF tend to vomit often, and get food stuck in the esophagus caused by reoccurring (tightening) at the connected site.
4) Children will face multiple operations (some kids as much as 40 or more) and lengthy hospital stays.
5) EA/TEF occurs alone (isolated EA/TEF) in about 40 percent of affected individuals. In other cases, it occurs with other birth defects, or as part of a genetic syndrome. My daughter is one of these cases - She has a rare heart condition called Shones Syndrome, which have resulted in her needing 4 heart operations under 2 years of age, and is still not "better". It is highly likely that she will need future heart surgeries. In addition, none of her heart issues were seen in utero and this made it very difficult to cope with.
6) Children with EA/TEF are born with some form of tracheomalacia which can result with ongoing breathing problems.
7) Treatment of EA/TEF hasn’t improved by leaps and bounds. There is a need to study this further, as they do not know what causes it. Who knows, maybe someday they can grow the missing segments using stem cells?
8) EA/TEF is rarely prenatally diagnosed. When EA/TEF occurs as a feature of a genetic syndrome or chromosomal abnormality, it may cluster in families according to the inheritance pattern for that condition. Often EA/TEF is not inherited, and there is only one affected individual in a family.
9) There is limited help for families and many of these children live isolated lives to keep them healthy. In my humble opinion, more funding is needed to help aid the parents in navigating through the ongoing challenges that prevent our lives from moving in a forward direction.
10) More support groups are greatly needed to help the child, parents, siblings, grandparents and so on. I plan to launch my podcast channel as a pathway that can allow us parents to tell our story to someone who "deeply understands" there is a special connection in knowing that you both have or currently walking around with a broken heart that needs love and support.
Last but not least... because my ridiculously sweet daughter Faith is a EA/TEF Warrior who was born with this genetic condition.
In today's ever-growing online driven social society, I know in my heart that providing a safe, loving, compassionate and nonjudgmental environment can help with the grieving process, ease anxiety and working through fears of the "unknown" all of which takes a massive toll on our mental health.
Parent to parent support is critical for the healing process. We can find strength and confidence from one another 💞
Additional support resources can be found here.
Esophageal Atresia and/or Tracheoesophageal Fistula - NORD (National Organization for Rare Disorders)
Caring for a Seriously Ill Child (for Parents) - Nemours KidsHealth
The stats are as follows associated with EA/TEF
Surveillance program In Alberta, Canada
Total births 404,595
EA with TEF 66
EA without TEF 13 (this is where Faith fits in) and is much harder to treat.
Please help me share this so more people can find out about it. Thank you 🙏💞
#EsophagealAtresiaawareness #esophagealatresia #parentingrare #medicallyfragile #specialneedskids #specialneedsparenting #medicalmomma #nicumom #heartwarrior #CHDawareness #shonessyndrome #esophagealatresiawarrior #tefawareness #raredisease #vacterlassociation #heartmom #scarsarebeautiful #EsophagealAtresiaSurvivor #heartstrong #bekind #momsofgirls #ronaldmcdonaldhousecharities #yycfamily #yyckids #albertachildrenshospital #albertabusinesswomen #canadianmoms #momwarrior