Hemophilia presented itself to us when we had our 2nd son.No one in our family has a Hemophilia history.
I opted for a 2nd c-section(1st was a emergency c-section due to being breech).At first,everything was just fine.We chose to have him circumcised as we did our first.He had the plastibell method.Over in the night,the doctor came in and informed us he was being moved to the children's hospital bc he was still bleeding and they couldn't get it to stop.The doctor had thought something had been done wrong with the plastibell so….he removed it….yes,removed it…to find out nope…that wasn't the problem. Remember now…i had JUST had a c-section! I sure wasn't staying behind!! So,off we went to children's! Thats where they ran his factor levels and they were less than 1%…we had a hemophiliac.
When I first heard those words.."He has Hemophilia",I lost it! I had never heard of it before so I literally at that time thought a-Hes going to bleed to death from being circ'd and b-He's not going to live long or if he does..what a horrible little life he will have!
I started reading..seeing how they bleed….into muscles…into joints…they can bleed for no reason…the damage they can have…on and on………and on! I was terrified!! My poor baby boy!!!
The more I read,the more it seemed "I" gave this to him…"I" made my baby boy have to live with this.."I" made him sick"….oh,the mommy guilt!!!
He had his first dose of factor in the hospital to stop the bleeding from the circ.
Then…..
time came for us to leave…to go home! I was terrified again!! What if he bled to death at home?? I was scared to even hold him!! I didn't want him to bruise….to have a bleed!! What would I do?!?
Well,what I did was..love him to pieces..*gasp*..we HELD him!! lol
Did he bruise? Yep,he did.Did he break? Nope..he sure didn't :) Actually,he didn't even have to hardly have any factor beside a couple until he was FOUR!
Actually,as weird as it may sound and even though we were scared,I KNEW I wanted him to seem just as "normal" as his older brother who didn't have Hemophilia.
We had the knee pads….elbow pads..which he did wear these a good bit when he started crawling/scooting…we had a helmet..but he only wore it mayyyybe a handful of times! There is NOTHING wrong with a helmet but I don't know…I just couldn't do it!!
Turns out…he IS "normal"…so is my other 3 Hemos:)
I see lots of posts in various places from new mama's…asking questions..you know what the most common one I see is? "Is it normal to feel this way?"
Um,YES!! As "normal" as it gets!! I mean,its a horrifying experience if you have never heard of hemophilia before!! Why in the world would you NOT be terrified??? To me,THAT'S not normal!!
It's going to be ok,I promise:)
You may feel guilty..Don't:)…ok,ok…truth is..even after 4 hemos,the thought still creeps in sometime.
You will get through this…your kid will get through this:)
There will be bumps,bruises,bleeds along the way..y'all will get through this too:)
Most important--He/She is as "normal" as everyone else..I mean,aren't we ALL different anyway?!?
Keep on keeping on..this too shall pass….
oh,,BTW..This "little fragile Hemo boy"..is now 11:P
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