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Author Topic: Congenital giant nevus  (Read 1859 times)
rivey81
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Congenital giant nevus
« on: July 23, 2008, 11:36:15 AM »

Hello,

We just received our PA for a beautiful little girl who was born with a congenital giant nevus.  I was looking for any other adoptive parents out their who have experience with this SN.  We have spoken with many doctors and are well aware of the risk of melanoma over her lifetime.  I also want to encourage those of you still looking for your child to consider children with nevi.  Nevi are not associated with with any neurological issues.  Surgery is likely at some point, but may not be necessary.  Often, doctors give you worse case scenrio, but most children born with this condition live normal long fruitful lives. Children with this condition face shunning in China.  (Yes, it still goes on today) Please do some research and decide if your heart is open to this SN. 

Sincerely,
rivey81
LID 10/16/06
LOI  6/20/08
PA  7/12/08
for Joy Elizabeth
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rivey81
LOI 8/10/2010
I-800A Approved 11/29/2010
DTC 12/3/2010
LID 12/08/2010
LOA 01/17/2011
I-800 Approved 2/9/2011
Cabled 2/17/2011
DS- Wuhan
Long4Lia
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Re: Congenital giant nevus
« Reply #1 on: July 23, 2008, 12:08:13 PM »

There is a wonderful family from my agency that adopted a BEAUTIFUL little girl this past spring. Here is her blog http://ourchinagirladoption.blogspot.com/ I'm sure she'd love to talk to you.
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DD Home 12/2007 Yunnan
DS Home 3/2009 Chongxing
DS Home 12/2012 Jiangsu
katep
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Re: Congenital giant nevus
« Reply #2 on: July 23, 2008, 12:24:35 PM »

Congratulations on your referral and PA.

I don't want to be argumentative, but I think it is very incorrect for you to say that "nevi are not associated with any neurological issues." There is a definite increased risk for neurocutaneous melanosis (basically melanoma in the brain). It is rare, but still a possibility. It is the reality for one parent who adopted a little boy from our son's orphanage.

Parents should be aware of the warning signs of NM (hydrocephalus, seizures, cranial nerve dysfunction, and signs of spinal cord and root involvement) and have appropriate specialists lined up to track at-risk kids. The risk for NM increases with certain types and numbers of nevi. I don't want to scare anyone off these amazing and wonderful kids, who definitely would have a hard life if left in China. BUT there are specific risks involved with this SN, just as with any other. Parents need to learn - and accept - the specific risks involved with each SN they consider.

And we always need to remember... there is NO adoption from China that is without risk. Even NSN adoptions.

Kate
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Mom to two boys born in Jiangsu and one born upstairs
http://www.livingbyaccident.blogspot.com/
rivey81
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Posts: 25


Re: Congenital giant nevus
« Reply #3 on: July 23, 2008, 12:51:06 PM »

Yes, we have spoken to many specialists.  We are aware of the small risk of NCM and yes it does occur with children with congenital nevi.  My heart goes out to the family of that little boy. However, the risk is small and the children are not born with neurological issues. They only occur with the diagnosis of NCM.  Thus, my comment.  My other children could also develop a serious illness or be in a serious accident.  I understand this SN is not for all families, but may be for some.  I did state that personal research is a must.  My agency says "these  children do not often get adopted" and I was trying to do my part to get the word out that MOST children with congenital nevi, especially not involving the spine,  live normal lives.  Please visit www.nevusnetwork.org or www.nevus.org for more information.  We are making an educated decision to give our daughter the best medical care possible and the greatest chance to achieve her full potential. 

Sincerely,
Rivey81
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rivey81
LOI 8/10/2010
I-800A Approved 11/29/2010
DTC 12/3/2010
LID 12/08/2010
LOA 01/17/2011
I-800 Approved 2/9/2011
Cabled 2/17/2011
DS- Wuhan
waitingformeimei
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Posts: 1,026



Re: Congenital giant nevus
« Reply #4 on: July 23, 2008, 01:36:04 PM »

Our oldest daughter adopted through the NSN process has one. (Yes, it is large and in a very noticable spot.) It is very easy to manage and I would be more than willing to answer any questions about it. We do nothing other than go to the pediatric dermatologist a couple of times a year and protect it from sun exposure.
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LOI 8/31/07
PA 9/28/07
LID 12/12/07
LOA/LSC 2/5/08 Yep, 54 Days!!!
TA 2/29/08
Home 3/29/08
oneblessedfamily
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Re: Congenital giant nevus
« Reply #5 on: July 23, 2008, 01:40:18 PM »

Thank you, Kate!  It's important that people know the risks going in, and while you never think it will be your child, it has happened to at least 2.  I think of people who adopt this SN and hope they go into it knowing what *could* be.  And hoping for the best.

Mary
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6 kiddos, 4 adoptions (China, Haiti, & Uganda)
Aidah Kwagala home from Uganda on March 26.
chinafor6
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Re: Congenital giant nevus
« Reply #6 on: July 23, 2008, 04:39:09 PM »

Congratulations!

I was so happy to read your announcement and I am also hoping you have PA for the cutie I am thinking about! I am very glad you mentioned her special need and the reality of it.  It does often scare people so it is nice to hear from someone who has done her research...it will be wonderful to hear how you are all doing in the future as that will help others.
Enjoy every moment!

Congratulations again,
Erin

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hallv
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Re: Congenital giant nevus
« Reply #7 on: July 23, 2008, 09:22:04 PM »

Here's another blog you might want to consider reading.  This little girl has had some recent surgeries.

http://www.journeytome.com/journal_view.cfm?journalid=821

Congratulations!!!!!!!!
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oneblessedfamily
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Re: Congenital giant nevus
« Reply #8 on: July 23, 2008, 10:21:40 PM »

I, too, am hoping you have PA for the specific child I am thinking about. 

Mary
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6 kiddos, 4 adoptions (China, Haiti, & Uganda)
Aidah Kwagala home from Uganda on March 26.
Waiting4baby#5
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Re: Congenital giant nevus
« Reply #9 on: July 24, 2008, 07:09:10 AM »

I saw a little cutie on my agency's designated list with a nevus on his face.  I think he is about 2 years old and adorable.  Anyone can PM me and I will tell them the agency's name.
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