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Milan Turns 9 & CDH Awareness Month

by Jenny

Milan turns 9 & CDH Awareness Month

Milan Snow Torry
Milan Snow Torry

April is a month of reflection for me – not because of professional success but because of personal triumph.  The triumph of those around me.  It would be an understatement to say that April is a month that incites so many emotions for me.  For one, it’s the month that I welcomed my greatest gift into the world. On April 18, 2012, my precious baby girl Milan Snow Torry was born and in many respects, is when a new chapter of life began for me.  Second, April is Congenital Diaphragmatic Hernia Awareness Month. These two will be forever linked.

Jenny and Milan
Jenny and Milan

If you have followed me over the years, you’ve probably seen me refer to Milan as my miracle baby.  She is a miracle because she was born with Congenital Diaphragmatic Hernia (CDH) and stands here today as a beautiful 9 year old girl.  CDH is a birth defect that occurs when a baby’s diaphragm fails to fully form, allowing abdominal organs to enter the chest cavity and preventing lung growth. CDH occurs in 1 in every 2500 babies, which equals to 1600 babies born each year with CDH in the United States alone. The overall survival rate is 50%. Yes, you read that correctly – 50%.  If that isn’t damning enough, the severity of the defect causes that percentage to be even lower. 

Milan and Tawa
Milan and Daddy

As you can see, the prognosis is severe for any baby born with this defect. For Milan however, it was worse. She was in the severest of categories and her chances of survival were minimal. Doctors placed her chances at 20-25%. Like me though, Milan is tenacious and has no quit in her. That coupled with breakthroughs in medical science, Milan is one of the success stories! From 4 hard months in the NICU to countless surgeries throughout the years, some of which were life threatening in themselves, Milan stands as a strong, healthy 9 year old girl. She’s the epitome of toughness. She’s my everything and the person behind the inspiration of who and what I bring to all of you.

Milan with Dr. Olutoye

While Milan is a success story and her results are astounding, unfortunately, I have also been on the other side of the ledger. Milan’s late brother Maddox lost his fight against this terrible disease one year before she was born. My soul hurts everyday for my son and he will always be in my heart. So much about life is what you make it and choose to focus on. For me, I don’t forget or minimize the negative experiences but I try to not let them envelope me to point that I can’t move forward. I pick myself up by focusing on the positives and looking forward. Over the years, Milan has given me reason to focus on the positives and look ahead, not behind.

One of the ways that I look ahead is by supporting and lending my voice to CDH awareness.  I mentioned at the outset that April is Congenital Diaphragmatic Hernia Awareness Month.  There are very few ‘Causes’ that I am passionate about or give voice to. For obvious reasons, CDH awareness is special to me.  My life was impacted and forever altered by it twice.  It’s one of the most widely-unknown yet common deadly birth defects. It has only a fraction of the awareness and little to no funding compared to other well-known medical issues. If nothing else, I hope to have raised some awareness by this blog of a defect that affects so many families.  As always, I thank you for your support and if you want to learn more and/or lend your support to CDH, you can visit CDH International.
Follow Milan Snow on IG for more stories!

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