First-Time Father

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Latest reply from Ross

(4 posts) (4 people)

First-Time Father

Posted 8 months ago by MikeD

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MikeD said 8 months ago

Hello,
I am a new first-time father of a beautiful, premature little girl who has been diagnosed with WHS. She was born on August 10, 2011 at a gestational age of 35 weeks and a weight of 2lbs 15 oz. She was born with cleft lip and palate and is still in the NICU. I have been reading the stories and posts on this site since my wife and I received the diagnosis and this has been a great help.

Are there any questions I should be asking?
Are there any things I should be making sure the doctor and nurses are doing?

This is all very new, confusing and scary to me. Any guidance would be greatly appreciated.
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cordillh said 8 months ago

Hi Mike, Welcome to the community. I have a 2 1/2 year old little girl named Riley. She was born at 38 weeks, weighing 4 lbs, 5 oz, and spent the first 10 days in the NICU. We received her diagnosis when she was 7 days old. While she was still in the hospital, her pediatrician ordered several tests to give us baseline info and rule out any additional issues. They checked out her kidneys, which are fine, but commonly have issues with WHS. They checked out her heart and found an ASD. They did a hearing test, hearing loss can be an issue with WHS. It was overwhelming to have some many different tests done so early on, but it was nice to cross things off the lists right away and know who we needed to follow up with. Here is an article written by Dr. Carey, who specializes in WHS, and is good info for doctors to know in order to know what to look for. (http://www.ncbi.nlm.nih.gov/books/NBK1183/)

I know things can be very overwhelming in the beginning. We have all been there so please ask anything. Much of the research out there is old and no longer relevant so do not be discouraged. Riley is truly the best thing that has happened to us. She is crawling, pulling to stand, cruising along everything, walking with a walker and close to walking on her own. She is so determined, so loving and affectionate, and very much a 2 year old! Please e-mail me if you need anything. (cordillh@yahoo.com)
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celinaramos said 8 months ago

Hi MikeD, first off I wanna send you and your family nothing but support. For a first time father and mother it would be incredibly overwhelming, which I'm sure anyone will tell you. My sister is 24 and she was diagnosed about 2 years ago. She was born a month late, she was very underdeveloped and did not breath for a few minutes after being born. She went to several specialist to have everything checked, Cordillh mention above. Research your pediatrician, we found an amazing Special Needs Pediatrician who has a daughter with WHS. She's been our rock giving us information we never would have known about. I can tell you that Roxy is the light of our lives, the glue that holds our family together. With out here I think we would run around crazy. She makes us laugh and cry all at the same time. Right now its all about being overwhelmed, with doctors and peoples opinions, but your daughter she will blossom regardless. Please feel free to email me as well celinabramos@gmail.com.
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Ross said 7 months ago

Hi Mike, welcome to the site - and congratulations on your new(ish) arrival! My daughter, Mia, was born in January and weighed less than 4lb - she spent 3 wks in special care before we could bring her home.

I know how scary and bleak the early days can seem but my only advice would be, rather than worrying too much about all the potential complications WHS can (but might not) bring with it, just enjoy getting to know your baby girl. Easier said than done, I appreciate.

I won't repeat what I've already said elsewhere, but you can read a bit of our story so far here: http://www.wolfhirschhorn.org/category/mia-rose/ if you want.

Please just drop me an email if there is anything you'd like to chat over, new dad to new dad.

Love and best wishes from my family to yours.

Cheers,

Ross