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IVH Questions
happy2b - 09:36pm May 14, 2009 EST
Hello--
My daughter was born at 33 weeks. She was 3 1/2 lbs. On day two of life we were informed that she had a grade 4 IVH on the left. The doctors were shocked as they said she was too old to have such a bleed. Later the doctors told us she also had a grade 2 on the right. Then she was shipped to a university hospital due to her hydrocephalus and the neurosurgeon said she had bilateral grade 3's. Then right after that the neonatologist said she had bilateral grade 4's. Unfortunately, nobody agrees on the grading of the bleeds. Things only get more frustrating. Any time we ask for any kind of prognosis all we are told is that it is too early to tell but they did say she could be blind, deaf and have CP. Our daughter was discharged and did not need a VAD or shunt. The hydrocephalus is not resolving but is not growing. At one point she had a stiff right leg for 2 weeks but that went away. Later her right ankle became stiff for 1 month and that resolved also. They say even with the stiffness it is still too early to tell her function. Now our daughter is 2.5 months corrected age. She is doing everything a 2.5 month old should do. She passed her hearing test. She can hold up her head, moves both arms and legs spontaneously, coo's, smiles and tracks. I am so scared, confused!!! Does anyone have experience with this scenario. Specifically I would like to know:
1. When should we start seeing any motor deficits or signs of CP. Will she just suddenly lose function of one of her arms or legs as she gets older?
2. If she has a bleed shouldn't she have lack of function of her arms or legs from the day she was born?
2. If you have a child with IVH how are they developing?
4. Is it common to not have a consensus on the grading of the bleed?
5. Any other information would be greatly appreciated.
Hello--
My daughter was born at 33 weeks. She was 3 1/2 lbs. On day two of life we were informed that she had a grade 4 IVH on the left. The doctors were shocked as they said she was too old to have such a bleed. Later the doctors told us she also had a grade 2 on the right. Then she was shipped to a university hospital due to her hydrocephalus and the neurosurgeon said she had bilateral grade 3's. Then right after that the neonatologist said she had bilateral grade 4's. Unfortunately, nobody agrees on the grading of the bleeds. Things only get more frustrating. Any time we ask for any kind of prognosis all we are told is that it is too early to tell but they did say she could be blind, deaf and have CP. Our daughter was discharged and did not need a VAD or shunt. The hydrocephalus is not resolving but is not growing. At one point she had a stiff right leg for 2 weeks but that went away. Later her right ankle became stiff for 1 month and that resolved also. They say even with the stiffness it is still too early to tell her function. Now our daughter is 2.5 months corrected age. She is doing everything a 2.5 month old should do. She passed her hearing test. She can hold up her head, moves both arms and legs spontaneously, coo's, smiles and tracks. I am so scared, confused!!! Does anyone have experience with this scenario. Specifically I would like to know:
1. When should we start seeing any motor deficits or signs of CP. Will she just suddenly lose function of one of her arms or legs as she gets older?
2. If she has a bleed shouldn't she have lack of function of her arms or legs from the day she was born?
2. If you have a child with IVH how are they developing?
4. Is it common to not have a consensus on the grading of the bleed?
5. Any other information would be greatly appreciated.
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