I need some support I have a daughter with many disabilities!

User - posted on 01/09/2013 ( 1 mom has responded )




I need advice and some support. I’m 20 years old and my little girl is 5 months old. The day she was born they did an ultra sound to see her because they couldn't pick up her heart beat. They seen there was water on the brain. I delivered her in a small town so with the fluid on her brain they wanted her to be sent to a children’s hospital right after I delivered. The pregnancy went very well and my little girl was so beautiful me and my babies dad got to see her for less than five minutes and she had to be flown to a children’s hospital . It was the hardest thing to see your child be rolled out of the room and taken in a helicopter to a different hospital. Seven hours after delivery her I was able to leave the hospital so I could be with my baby. She was in the NICU where they were running test and trying to figure out was all was wrong. Then a group of doctors came in and told us that “your little girl won’t make it past 24 hours” it was the hardest things to hear. They diagnosed her with bilateral carotid artery infarction. This basically means she had two strokes in the womb. I stayed at the hospital that night with her the next morning the doctors came in and they were surprised that my little girl had made it through the night. They then said if she does make it she won’t live very long and she will have to have a breathing tube along with a feeding tube. But she was able to eat and breath on her own the doctors where so surprised. She got to go home after 4 days of being in the NICU. She was doing very well we had to go to the doctors all the time. And she was growing and doing very well. When she was 3 months old she had to have a shunt placed in her head because she has hydrocephalus. She was in the hospital for 7 days. Then when she was 4 months old they found out that she has high blood pressure she was in the hospital for 4 days because they had to find a medication for her. For her five month checkup we went to the doctor and they diagnosed her with muscular dystrophy, cerebral palsy, hydrocephalus and middle cerebral artery infarction (she only has 15% of a brain). Since she was a week old I got her physical therapy and occupational therapy and she’s in parents as teachers. I just want what’s best for my daughter and lately my parents have been telling me that my daughter was a mistake and I brought her into this live with all these problems that she didn't deserve. And just going on and on about how I’m a bad mother. I just want to know if anyone’s going through a similar situation or if anyone has any positive words to say to me.


Elizabeth - posted on 01/09/2013




I am so sorry you are going through this. I was a mom for the first time when I was 20 and it's hard enough being a mom at that age. You sound like you are doing everything you can. No child is a mistake. Continue to do what you are doing. Your daughter sounds like a fighter. Look how far she has come already. I don't know what her prognosis is, but I know even if she can't beat the odds you have given her a wonderful gift of life. She has probably touched many more lives then you realize. And she gave you the gift of motherhood that no one can ever take from you now. Your parents may be trying to distance themselves from her and you because they think it will be easier if your daughter can't beat this. However, the most important thing you can do is fight for her and enjoy every day you have. Treat each day as a gift. Love can do amazing things, even make miracles. I don't know if you are a religious person, but if you turn the unknown into God's hands you can focus on the good parts of being a parent. Good luck to you and your daughter. She is a gift no matter what anyone says to you.

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