I need some support a baby with many disabilities.

User - posted on 01/08/2013 ( 2 moms have responded )

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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.

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Sonya - posted on 01/10/2013

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Hi Jamie,
I have a 14 year old son who has Cerebral Palsy as a result of his delivery. The doctor didn't know what he was doing when he delivered him (my son's shoulders got stuck in my pelvis) and he was dead when they managed to get him out. I only got to see him for 5 minutes before they took him to another hospital about an hour away from my house. I didn't get discharged from the hospital for 3 days, so it took that long before I could see him. The hospital he was at actually called me at the hospital he was delivered at, and asked if I was going to come to see him, because they didn't know if he was going to live or not.
We spent 5 weeks in hospital with him and the doctors had a very poor outlook on what his life was going to be. He left the hospital with an NG tube, and 6 months later had a G-tube placed. His first brain CT showed that he had brain damage on the frontal lobe. Then 2 years later we had a brain CT done and the brain damage was GONE! They can't explain it. It's just not there anymore. Talk about a miracle!
We've spent the last 14 years in and out of the hospital with him. Most recently, his right lung collapsed, and was collapsed for over a year. The doctors told me that they'd have to remove the lung to prevent infection in his other lung. Then last spring we went to the hospital to have an xray done to see how bad the damage was, and THE LUNG WAS OPEN! This NEVER happens. EVER. The doctor says he's never seen a collapsed lung open after being down for almost a full year. He's been doing this for 40 years! And yet another miracle!
He's in a wheelchair and he's non-verbal. He's still got his G-tube for feeding. He's never said "mom" or "dad". He's never taken steps on his own, although he can weight-bear and will walk with my help holding him up. They told me that he didn't understand anything and his capacity would be at max. the same as a 2 year old.
So, now he is answering yes & no questions via symbols. He can "tell" me what movie he wants to watch by picking from a selection of movies I give him. He can do a lot of things that the doctors said he'd never do.
One thing I've always held on to is the fact that the brain is amazing. We don't know what's going on inside their brains or how the neurons are rewiring themselves. I've always talked to and treated my son like he could understand everything I'm saying to him. I prefer to give him the benefit of the doubt, instead of believing everything the doctors have to say. He's already defied them three times in his life, so what do they know anyway?
If your parents want to be angry, then they need to be angry at the doctors that kept her alive, not at you for being her parent. You didn't choose to have her taken to a NICU to be cared for. You didn't choose to have interventions done on her to keep her alive. The doctors chose to do that. God chose to keep her alive. Every child, no matter what their physical or mental issues are, are here for a reason. They all have a purpose and it's our job, as their mothers, to help them figure out what their purpose is.
My son's purpose was to teach me to be kind and patient and loving to those around me. He taught me to stand up for myself and my beliefs. He taught me that no matter what anyone says, a mother's instinct is always right.
You are a great mother. You are taking care of your daughter. You are giving her early intervention. You give her love. You will give her support throughout her life.
Personally, it sounds like your parents are going through a bit of shock and depression about their granddaughter. I had post-partum depression for 8 years after my son was born. 8 years! A disability affects the whole family, not just the parents. It sounds like your parents need to spend some time talking about the loss of their hopes and dreams about being a grandparent and then learn to embrace the kind of grandparent they can be to your special child. You need to be strong, and you need to lead the way for this. Treat her as you'd treat any other child. Love her like you'd love any other child. Lead by example and let them know that she is yours (and theirs) and she is here until God decides otherwise, so they better get used to it!
Counselling is a very good thing to go to after something like this happens. I helped me deal with my feelings of being an inadequate mother.
I'd also recommend getting into a support group where you can talk to other mothers who are raising children with disabilities. Online support is great, but it's much nicer to have a person who you can call or sit down and chat with when you're frustrated or sad. Start searching for that in your area, and if there isn't one, then find other support groups or make your own!
And remember... you never know what God's plan is. There is a lesson to be learned in everything that happens in life. What lesson should you be learning from this...?

Christy - posted on 01/09/2013

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I am so sorry that you feel like your parents are not giving you the support you need right now. Most states along with their eraly intervention, will also offer sessions with soocial workers. If your state is one that doesnt find a church, temple, synagogue, someone would be glad to help you through this. God made your daughter, and God doesnt make mistakes. Look at how much you have grown since she has been born.

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