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Intro- Not sure if this is the place for me (long)

Vitnicki83Vitnicki83 member
in Special Needs

Hi.  I have been reading some of the posts on the board and would like to introduce myself.  I do not know if there is anyone else on the board dealing with the medical condition my son has, but if there is anyone else like me out there with experience I would LOVE to talk to them.

Almost 2 years ago my DH and I welcomed our first into our family. I delivered, at 37wks, a perfectly healthy baby boy. We never had any issues with him until about 4 months when he began supporting himself in the exersaucer and began to scoot and crawl.  At this point, DH and I began noticing our baby boy had raised, hard bruises in various locations on his body.  We had no idea where they were coming from and they had us very uneasy.  We mentioned this to his ped at his 4mo well visit. and they told us that if we noticed 2 or more bruises in the same region (arms, legs, trunk, etc) at the same time, to let them know and they would order bloodwork.  We left it at that and just assumed he was a very active baby who bumped easily.  Fast forward a few months and DH and I are beginning to get very concerned at the bruises (not to mention the looks and comments from people who saw our son).  We again called the ped and they ordered the bloodwork.

After a whirlwind of 3 days, initial bloodwork results (which they did not exactly tell us a diagnosis), a trip to Childrens Hospital Of Philadelphia, and an appointment with the Head of Hematology, we were given the diagnosis that our son (8mo at the time) had Severe Factor VIII Hemophilia(Hemophilia A). 

 We were told that this is a (sex linked x-chromosome) genetic condition, which was a total shock as there is NO family history.  It was later determined from genetic testing that I am the carrier. A very scary thing, as we were 24wks pregnant with baby #2(a boy as well).  He does not have Hemophilia, but we did not know if he would have it or not until he was born.

The better part of the last year and a half have been quite a ride for our family.  We have learned so much, but there is still so much to learn.  If there is anyone on this board dealing with Hemophilia, I would be very grateful to talk with them about their experience. If there is not, thank you for taking the time to read my story!

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Re: Intro- Not sure if this is the place for me (long)

  • realisticdreamsrealisticdreams member

    Welcome, I don't know offhand if anyone has a similar dx but you can also try madison's foundation, it will connect you with other parents who have the same dx.

    GL 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • MaxandRubyMaxandRuby member

    I can't write much as I have to take DS2 to therapy but my cousin had a baby boy earlier this year with the same thing. They didn't know it until the birth. His wife is the carrier and she has a family history of it.

    If you have questions feel free to ask. I can always ask them or hopefully there is someone else on the board with experience! 

    Welcome!

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