Tuesday, 21 August 2012

Blog 29 - Your Baby has Down Syndrome

Jess acted like a typical baby in hospital. She slept and breastfed well.

But once we got her home she changed. She slept all the time and I could not wake her up to feed her. This was really scary! We didn't know what to do and the chemist clinic nurse wrote a letter for us and told us to take her back to the hospital straight away to seek their advice.

We arrived at the hospital and the nurses were horrible. They were rude about the letter and made us feel inferior. We did know what we were doing - something was wrong!

They did contact the paediatrician who was on holidays. The paediatrician told them to show me how to force feed Jess with a bottle. If that had not worked then she would have had a feeding tube.

Jess also had jaundice so we placed her bassinet by the sliding door in our lounge room, would force feed her with the bottle and try not to worry about why she was sleeping so much.

I took tablets to help me produce milk and I would express so she could have breast milk. (I was able to provide breast milk to Jess by taking the tablets and expressing, for 6 months - I was determined due to babies with DS having low immunity).

When she was awake to breastfeed, Jess would often release from the breast and milk would squirt across the room. At the time, not having the diagnosis, I did not know that this was because of the low tone in her mouth due to the Downs. (Once we got the diagnosis it all made sense, as did all her behaviour! I perservered with the breastfeeding until I realised that Jess found it too hard. She was distaching constantly and she was chugging the bottle....so I went with expressing and the bottle).

 The Diagnosis

When Jess was 4 weeks old we took her to see the geneticist.

The geneticist straight away laid her on the examination bed and started moving her legs and arms. I was wondering what was going on and why was she doing that? That hadn't been done with the other children. She was actually testing Jess's floppiness - a major indicator of Down syndrome.

All was quiet. She then asked me what I thought Jess had. I said that I thought she had a mild form of Crouzons.
The geneticist bluntly stated that she wanted to do a  'Chromosone test' plus the 'DNA test for Crouzons'. The chromosone test was to test for Down syndrome as that was what she thought Jess had. She said that she was very surprised that no one had mentioned Downs to us.

I felt a chill go through my bones. This was not what I wanted to hear.

Upon hearing this, a vivid memory instantly came back to me....when I first held Jess and looked into her almond shaped eyes I had the first chill go through my body as I thought that her eyes looked like she had Down syndrome. But because no one mentioned Down syndrome whilst we were in hospital, I had pushed the thought away to the back of my mind. I didn't want to go there. I didn't want Jess to have Downs.

I did not know at the time, but my husband had looked at her eyes at the birth and thought the same thing...that she had Down syndrome...but he unlike me, didn't mind if she had Downs because he had a grown up cousin who he played with as a child, who had Downs. Downs was not an issue for him.

Jess had her blood tests and we waited for the chromosone test to come back.

My friends came over and prayed over Jess and nobody said that they thought she had Down syndrome. They all thought the test would come back negative.

That night we googled Down syndrome and read about all the different forms. We prayed that if she had the syndrome that it would be the mildest form - Mosiac.

The results came in the form of a phone call, the next day. The phone rang and my husband and myself argued back and forth over who was going to answer it. I did. I held my breath whilst the geneticist told me the results....Yes Jess had Trisomy 21- she had 3 of Chromosome 21 in all of her cells - it was the most common form, not the mildest. She had Down syndrome.

It was true.

She also told me that she had contacted DSAQ and they would be sending me an information pack on Down syndrome. That was it. No counselling, no advice...nothing. (No phone call or visit either from DSAQ.)
I cried and went into shock. I did want to hold her or look at her. I didn't want anything to do with Jess.

I am very ashamed of my reaction.

It took a few hours for me to come to my senses. I had to give myself a good kick up the backside because Jess was the same baby after the diagnosis as she was before, so why shouldn't I love her as I was a few hours before?

At six weeks I went back to see the obstretrician for my post-checkup...and we took Jess to see the paediatrician for her checkup.

I told the obstretrician and he was sympathetic. I also asked him what was the statistic of me having a baby with DS from the 13 week tests. He said '1 in 5'. You know he did not tell me that statistic at the time.

We were very unhappy with the paediatrician and asked her why she had not picked up the Downs. She said because she was looking for Crouzons...that was it.

We actually think they both suspected DS (that's what the whispering was most likely about) but neither wanted to tell us....they left that job for the geneticist.

We then had to wait for the DNA test to come back on the Crouzons, as there was still the 50/50 chance of her having Crouzons as well due to it being a different chromosone that would be affected. God in His wisdom did not allow her to have the Crouzons which is an absolute blessing for her.

This diagnosis challenged my faith yet again.

I had prayed for Jess to not have Crouzons, and she didn't. But I was angry with God for letting her have Down syndrome and I told him so! It wasn't fair on her. It wasn't fair on me. It wasn't fair that I now had 3 children with disabilities. My life would not be the same as any other mother's in the entire world. I didn't like that.

But I made the decision  - I could either be angry with God and turn away again, or I could dig into my faith. I decided on the latter - to turn towards God.

I didn't understand it. I didn't like it. But I would have FAITH.

© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission.

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