We got Kayden's Autopsy. Info on Parkes Weber Syndrome

Well the social worker from Cinncinatti called today with Kayden's Test results. He had Parks Webers Sydrome. She said that the doc. said it was a very complex thing. The social worker said she didn't know if the doc ment complex as in other things were involved or not. We have to do an indepth family tree because it can show up in other family memebers as small things such unusually large birth marks, or red birth marks, or portswine stains. If there is nothing to suggest it is inherited they will not do genetic testing. If there is they will do it.

The thing is my husband didn't know his father well. He was raised by a step father and his biological father is now deceased. His mother doesn't speak with his grandma.
I don't know that my dad would tell me about his family theres only so much we can gather.

I'm so scared. Its like I get my heartbroken over and over again. She said if it is genetic that we can still do IVF. The thing is they have to know exactly what they are looking for.

I don't know what to do.

Quoting HoneyBear:“ Well the social worker from Cinncinatti called today with Kayden's Test results. He had Parks Webers ... [snip!] ... genetic that we can still do IVF. The thing is they have to know exactly what they are looking for. I don't know what to do.”

Oh wow, Ive never even heard of that.
They said it could happen again right. If so, I would demand the family members get the test done. Tell them its a MUST!!!
Im sorry your going through this, I pray you find results, to possibly take some weight off.
Thinking of you!!

well they dont know. It can be sparatic or an anomily ya know like a one time thing but it could be genetic. So they need a family med history before they decide to do genetic testing. Most of my family is here my husbands family is in Jamaica, india and the bahamas

Quoting HoneyBear:“ well they dont know. It can be sparatic or an anomily ya know like a one time thing but it could be genetic. ... [snip!] ... before they decide to do genetic testing. Most of my family is here my husbands family is in Jamaica, india and the bahamas”

Wow, Im sorry, your going throught this.

Okay girls so I thoight since it is or was PWS awareness month I'd post a little info on what it is. its very complex so I'm trying to post the most understandable info I can find and use what the doctors told me. I know you have probably seen a child with a similar condition even though it is rare. Port wine stains are very common small or large pink - purple birth marks. Also I feel its important to raise awarness because the treatment for these conditions often leaves children bruised and I've read many parents have people approach them an accuse them of child abuse which I'm sure is very painful for them.

I'll post a photo of Kayden's since awareness is important and there doesn't seem to be much but please remember this is/was my baby and he was perfect to me all I ask is that you don't make cruel comments he was very sick in the photo.

Medical terms:
AVM-Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth.
Hemangioma- The simplest way the doctor explained this to me was that it is a non cancerus tumor.
Hemangioma of infancy is the most common tumor in infancy. The incidence in the newborn nursery is between 1.0 percent and 2.6 percent in white, black, and Japanese infants. An incidence of 10-12 percent has been reported in white children by age 1 [1]. It is characterized by an initial phase of rapid proliferation, followed by slow involution, often leading to complete regression.
Although most of the tumors are small and innocuous, some may be life- or function-threatening, or have associated structural congenital anomalies [2]. .

Port wine stains - Red or purple birthmarks they can be small on some people and go undiagnosed Port Wine Stain vascular capillary malformation birthmarks vary from light pink to deep purple, caused by an overabundance of capillaries just beneath the surface of the skin. . The marks can be minimal to very extensive, covering 50% or more of the body.

Parkes Weber syndrome: PWS is defined by the presence of an AVM in addition to a cutaneous hemangioma and segmental hypertrophy. Similar to KTS, PWS more commonly affects the lower extremities. Patients with PWS have a higher incidence of severe complications (most times fatal from what I've read)than patients with KTS. For more info visit www.sture-weber.org or for support if your child or unborn child has a vascular malformation or birth mark please visit http://groups.msn.com/vascularbirthmarksupport

Awww, poor little guy. I hope he wasn't in any pain.

I don't know my biological father's side either and he died of cancer a couple years ago. I have no idea what kind or anything, it's hard when you want to know the medical history of your family that you are seperated from.

Quoting northwind:“ Awww, poor little guy. I hope he wasn't in any pain. I don't know my biological father's side either ... [snip!] ... no idea what kind or anything, it's hard when you want to know the medical history of your family that you are seperated from.”

Hi North thanks for the support. The nurse told me that babies in pain have different facial expressions and often wrinkle their forheads in discomfort. She said he hadn't shown any signs of pain so they didn't give him meds. He did squeeze our fingers though.

How's that gorgeous little girl of yours?

Im so sorry, it must be very hard on you to need the medical information and yet have no way to really get it... I've been waiting to see my geneticist since January and have been told I have an appointment in July but dont have an exact date yet so im just hoping I dont have to work or can get the days I need to go down there off...

Kayden was adorable!! Im glad that he wasnt in any pain!!

Quoting HoneyBear:“ Hi North thanks for the support. The nurse told me that babies in pain have different facial expressions ... [snip!] ... any signs of pain so they didn't give him meds. He did squeeze our fingers though. How's that gorgeous little girl of yours?”

I'm so glad they didn't see any signs of pain. It's a little comforting to know that our babies only felt love and comfort their whole lives.

Adria is doing good. She will be 6 months old soon and she is such a mommy's girl. Whever anyone else holds her she just stares at me like 'what are you doing, come get me!'

Quoting ~Kim~Lipstick Mafia:“ Im so sorry, it must be very hard on you to need the medical information and yet have no way to really ... [snip!] ... have to work or can get the days I need to go down there off... Kayden was adorable!! Im glad that he wasnt in any pain!!”

Thank you! we have different days to choose from between June 30th and July 14th its just comming up with the money to make the trip. good luck with your trip! I hope it all works out positively.

Dont worry, mama.... How could anyone have anything negative to say about your precious baby. He is a beautiful baby.
I am so glad to hear that he didnt suffer. Sorry that you are still having to go through all this. I hope everything turns out for the best.