I am grandma, my daughter found out at her 20 week ultrasound. We were so scared and lost, we had never heard of hydrocephalus. Soon as we found out, I started researching & researching. My daughter lives at home with us, so I was involved in her whole pregnancy. We started going to the perinato. And he recommend my daughter have C-section at 38 weeks at Duke. So we went and met with Dr. Herbert Fuchs, what a relief. Someone who knew so much and was so confident and we were going to be delivering at"DUKE" So the next few months were a little easier, knowing that. Delivery was scheduled for 2/4/2010. We got to Duke which is about a 2 hour drive, her c-section was scheduled for 12:30 but if anyone has been to Duke, you know, they are never on time...So we had our little angel at 5pm, she weighed 8lbs even. They took her straight to NICU. We went in and seen her about 2 hours after being taken there. Her face was so chunky she is so precious. She was scheduled for VP shunt on the next day, which went real good. She Also has Dandy-Walker, so we were worried that she would need 2 shunts. So anyways they kept telling us they were keeping her to make sure there was no infection, they took a swab of the belly incision and a shunt tap. For 10 days in NICU they said "NO INFECTION" but they kept giving her different antibiotics. hummm!! Well on day 9 they said she could go home and we started the process, CPR, Baby seat test etc. Well the next morning Dr. Fuchs asked what my daughter was doing with the car seat, and she told him, we are going home today. He said NO NO NO we have to wait for the infection from the belly incision to clear up first, he said at least 5 more days. Well needless to say we started crying, and thinking why are none of them on the same page. So real quickly the crying turned to being real mad. Because they have been so unorganized. Anyways after expressing our anger they did get Vanessa(my daughter) and Kylah a room together, so they could finally bond. We got to feed and change her diaper, which by then she had a very bad rash, we were so happy. But when changing her diaper I noticed she was in pain while peeing and pooping, and the nurse said "thats normal" and for us to not wipe the white diaper creme off, only wipe the top layer. Well friday came and it's time to take Kylah home. YAY!!! We drive the 2 hours home, so excited, Vanessa's brother and sisters waiting patiently.. When we get home, I am changing Kylahs diaper, on my bed. I asked Vanessa, has she seen her poop coming out were she pee's and Vanessa thought it was squishing up towards that way. Well I went on and wiped her bottom, and OH MY GOD!!!! There was no place for her poo poo to come out,,,that's right, none!!! I was traumatized calling my husband, my sisters, to make sure I wasn't just missing it, or something. But no it was not there. So Never ever, in my life have I felt so helpless, and lost. My mind was thinking, we can't possibly trust the people at Duke (how can they not have known) Then things start making sense, like when the nurse said when she took her catheter out there was a little feces in her urine (yes she had a cath in) and yet no one seen that there was no anus.. Our poor little girl was trying to push her feces out PIN SIZE hole right above where it should be.. So we took her to Chapel Hill. And every Doctor was in that ER room in disbelief. We all know when a baby is born thats one of the first places the pediatrition looks and to take temp, RIGHT?? So the Pediatric surgeons at UNC were GREAT!!! they fixed her right up.
Kylah has been in Chapal Hill all weekend because her shunt gets so big. And she is vomitting all the time. So they have done the usual CT, shunt tap, ultrasound. And they say nothing is wrong, but now tomarrow they are doing a shunt tap with dye. There is no other signs of shunt failure, but from what I've read, not alot of signs at the begining stage of shunt failure. I just pray they can figure out soon!!! I also would like to know, has anyone else been having troubles with neorsurgeons not coming in and checking, it seems like everyone else does the work. We have only seen the neurosurgeon 1 time for about 5 mins. So I feel we have no relationship with Kylah Neuro, or I feel when something does go wrong, I have no one in particular to call. So we really feel ALONE... any advice?? Thanks
Well Kylah will be in surgery tomorrow, her shunt is failing. They are going to put a programmable shunt in. Thank goodness!!! I KNEW SOMETHING WAS WRONG!!! Thanks to this web site and all of your information. That's what kept us being persistant. So THANK YOU ALL!!! Love Kylah's Family
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