Diagnosis Stories – Shirley and Charlotte.

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My story and Charlotte’s story has been a year in the making. I wanted to write about my highs and my lows, my fears and my accomplishments. But most of all I wanted to write about one of the most amazing experiences having Charlotte has brought into my life and my family’s.

On the 9th of August 2015 I gave birth to a beautiful baby girl, when I looked at her there was such a relief. I remember as I looked about my precious baby I noticed how petite and differently shaped her little ears looked and she wasn’t the best feeder at first but that was ok, she was perfect in every way.

Prior to her arrival it was a wonderful time for me, I was so looking forward to the arrival of my precious bundle. I remember laying in the hospital bed with my husband beside me, he was looking on FB and came across this picture of this cutest little toddler with the most adorable chubby cheeks and these adorable pig tails. This little girl also had Down syndrome, I remember my husband saying how beautiful she was and I agreed yes she was, but deep down inside I knew I could not handle having a child with Down syndrome. Little did I know that that was all about to change as God had already had other plans for me.

I’m not one of those people that could have a special needs child, that to my understanding only happened to special parents, parents that could handle that situation, right??? Wrong. Little did I know there and then that that beautiful little girl in that picture would be very similar to the baby I was just about to give birth to.

I had a horrific ordeal after having Charlotte. I haemorrhaged and had a retained placenta and needed a d and c and a blood transfusion. This happened all in a 48 hour period on top of having an allergic reaction to the different drugs they were pumping into me. I was very sick, and all the while trying to enjoy my new baby whilst she was also having trouble feeding. I had to express and we got milk down her with a teat which by the way she handled like a trooper.

I asked the nurse why was my baby having trouble feeding, after all she had been my tenth baby and I had never had this problem before. All my other baby’s could never stop feeding off my breast, why was Charlotte so different. The nurse answered telling me that it was because Charlotte had a large tongue. Ok, that was strange, I wondered why. So I grabbed my phone and googled straight away, and would you believe the first answer that came up for the cause of a large tongue was Down syndrome. For a minute I became very fearful but then realised the doctors or nurses had not said that there was anything wrong with Charlotte so I just shrugged it off.

The next morning the doctor came in telling me they just wanted to do a routine medical check on Charlotte, I thought about it and agreed. Well they did take a while and then finally brought her back. It was then the doctor came and saw me and sat down on the bed next to me and at that moment my life changed forever! “We think Charlotte has some chromosomal markers and we are just waiting on the test results”. I went into panic over load as I knew straight away that they were telling me that my precious baby could have Down syndrome.

I had heart palpitations and went into an overload panic attack. Then the doctor left me, with all these new fears of the unknown, thoughts racing. What was to become of my baby, my family, my life. I knew nothing and felt completely in the dark. I truly felt like I was experiencing the most darkest moment of my entire life. On top of that I now had to tell my husband which brought another fear. How would he take this? What would he think?  This truly was not happening, I’m just having a nightmare, please God wake me up.

Then my husband came in and I told him the “BAD” news. I imagined he would mourn with me and be totally devastated but instead he turned around and said “but she is beautiful and she is ours”. At that moment I fell in love with my husband all over again, I knew he accepted whatever was thrown at us but at the same token he believed there was nothing wrong with Charlotte. Because he couldn’t see the features but the minute they told me I saw the features more and more each time, It was a battle going on in my mind. Sometimes I could see it and sometimes there was nothing there. I was literally sending myself mad.

Then I became a crying mess, all I did was cry and cry and cry. I could not sleep, I could not rest, I felt so sick, all joy of having my baby was all gone. I felt like I could not breath and I could see no good of anything that was happening. No one had answers for me, I had a million and one questions yet at the same time I had no idea what to ask. Nurses looked at me with confusion as to why I was so upset and others just ignored me. All I wanted was to was go home, but I was so sick I could hardly get off the bed and Charlotte was still being feed by a teat. The doctor wouldn’t come near me. And I couldn’t stop crying.

I asked a nurse what would it mean to have a child with Down syndrome. She turned around and told me that I would have to watch her skin from getting too dry and I would have to watch how many trips to the fridge she makes because of weight issues (which I later found out was thyroid issues) and she may get to a mental age of 12.
Well that really answered so many unanswered questions for me. Thank you for being so forthcoming with all that wonderful information. I remember thinking I can handle the mentality of a 12 year old, I have the most amazing 12 year old daughter that can run a household standing on her head.

I did not sleep the whole night, I spent the night googling and and trying to read testimonies. I came across a page called “Noah’s dad” but My phone kept playing up on that one page. I just lay their all night trying to get my baby to feed, crying, thoughts racing.

The next day I was in an even worse emotional state. I couldn’t stop crying, I told the hospital I was well enough to go home and I was taking my baby home. I was a woman on a mission, I had to get out of there! The doctor gave me enough sleeping tablets for 5 days as she knew I had not slept for 3 nights. I felt like I was loosing my mind. My husband chose to do the night feeds the first night home as he was desperate for me to get sleep. 2 sleeping tablets later I was still awake, my mind was racing even more. Then my husband gave me a third sleeping tablet and I finally after 3 nights of no sleep and 3 sleeping tablets later, fell asleep.  I remember waking up half way through the night seeing my husband giving Charlotte a night feed, straight away I cried again and cried myself back to sleep.  I had woken to my nightmare!

The next day I still could not get Charlotte to feed off me, I was not bonding very well and my girls kept taking her to hold her. I’m glad they did as I was an emotional mess but made sure I did not cry around them as we had not told the kids yet. The following day the hospital rang to say they had the results. My husband, me and Charlotte went into the hospital to get the results. The doctor turned around to me and said that she had a fair idea I already knew what the results were, and she was correct, I did know in my heart. Charlotte was positive for trisomy 21, there and then I felt like I was ready to move on and cope with whatever was thrown at us. My doctor said Charlotte was beautiful and that she will be such a blessing, and that my family would be a blessing to her. She prayed with us and encouraged me but I was still feeling deep sorrow.  That night I was more determined than ever before to breastfeed my baby as I knew she needed me, and I desperately needed to bond with her.  When everyone was in bed I held my baby close and little by little she began to latch on, from then the bonding process began, and my healing began.

We eventually told the older kids and then some very close friends and that in itself was like a weight was lifted, I reached out to many FB groups and so many wonderful mums reached out to me and helped me to understand that nothing I did or didn’t do made Charlotte have Down syndrome as I was carrying such guilt and blame.  12 months down the track I finally realise going through the emotions I went through when having Charlotte was very normal, but I wish I didnt mourn her birth. I wish I had celebrated her birth. Charlotte is one of the best things that has ever happened to me, I love her so much it hurts. She is so sweet, always ready to give me a smile and a hug. I just love her hugs. She loves to sit on my lap and watch her brothers and sisters play. I look forward to when she wakes up because I get those hugs all over again.

I want to tell other mums that have found out their baby has Down syndrome, congratulations! You are going to feel more love than you can possibly handle ad make the most amazing new friends than you ever had. Life will be a whole knew journey full of challenges, excitement and celebrations of all those milestones met.  You will cherish your little one and not want to imagine life without your child. The hard times will come, you may still feel sorrow or grieve but it will pass.

God has shown me just how precious life is and how to not take things for granted. He has shown me that though the hard times may come he will always get me through, and from all that has happened he has blessed me beyond measure for Charlotte is fearfully and wonderfully made!!!!

Shirley

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