My story from birth to now.

[xxkellywxx]

You could say I was a miracle when I was born, I was three months premature and weighed just 1lb 10oz. Thinking the worst the doctors told my parents to prepare for my journey to heaven. After a majour operation to fix a problem with my heart by taking a vein from my fraile foot it was starting to look better. After three months in an incubator I started to get stronger. Before long it was time to take me home.

Fast forward six years to the day I started school, I enjoyed it, looked forward to school that day. Getting dressed downstairs singing my favourite song, pulled my top up to which my mother gasped.

"You're not going to school young lady you have the chicken pox!"

Disappointed I went back in my night gown. As the day went in I grew more and more tired, which was unusual for me. I woke up the next morning after a whopping 19 hours sleep!

I went into the living room and saw a woman I didn't recognise, staring at her she looked confused.

"Are you ok sweetheart?" She asked

I never said a word, just sitting down on the chair staring at her. Who was she?

She got up and rang the hospital, I could hear her panicked voice,

" please you have to help, my daughter is acting strange she don't know who I am!"

As the doctors examined me their faces went white, they said

"Miss, we have to rush your daughter to the hospital right away, she has developed encephalitis, this is extremely rare and has swollen her brain, she can become severely disabled if we don't act now!"

Rushing me in the ambulance they started to take care of me, once there everything went fuzzy. All I remember is everything was very bright, it hurt so much, my mother carrying me in her arms whilst I screamed as the intensity of the headache grew too much. They placed me down on the bed, I was petrified, the doctors grabbed my arm and put a tube inside. The pain of having a drip put in your hand I will never forget. For the next 24 hours they monitored me and within 48 hours I was well enough to head home.

13 years in the future I have turned 18, met the guy of my life, we met on MySpace. Of course I was a little scared to meet him because of all the things that happen to young girls that meet men, but I was lucky, he was genuine, after a year of being together we decided to try for a family, not long I got pregnant, extatic we rushed to the family planning to get everything in motion. Before long I was on work experience at barnardos charity shop. I went to the toilet and my world collapsed, there was blood. I rang the hospital straight away with my boyfriend by my side, they did an internal scan and found nothing, I have lost the baby. Devistated we continued to support each other, I got pregnant a second time 4 months later and also lost that one. A year later I got pregnant again, I have heared that taking baby aspirin would help so I never hesitated. 8 weeks pregnant and we went for a scan. We saw the heartbeat and out little blob was visible, happy with joy I knew it was finally going to happen. The doctor advised us to come back a week later so we did. As usual they did an internal scan, clutching my boyfriends hand I smiled and looked at the screen, the doctor frowned, looking around and frowned again. She looked at me and said,

"I'm sorry but the heart stopped"

My world collapsed, how can this be? They ran some tests and it came back that I have got sticky blood syndrome, also known as hughes syndrome. They advised me that the next time I get pregnant I should start heparin injections.

Now I am here sat on the chairs typing my story with my phone, almost a year since I've lost my little blob, I now know what is wrong, kinda obvious since I have fainting spells and funny turns. I am now 22 years old. Hoping to finally start a family next year, I hope to make new friends in this community and also help others that are struggling, I hope all of you have a happy new year and that next year will be better for us all. Much love xxx

[MaryF Administrator]

Thank you for writing this, many people will recognize elements of your history of being similar to their own, it is so very helpful to us and the forum in general when people take the trouble to write up their own personal stories to date. Things should really improve for you now, as your medication will be fine tuned and also any future pregnancy plans will be given the correct help. Also sorry that you have suffered loss like this. Wishing you a great 2013. Mary F x

[Jade]

You have been through a lot in such a short life. The good thing is that your Drs tested you and found the reason, which is more than half the battle believe me.

As you say you have funny turns are you receiving treatment in the meantime such as aspirin or warfarin? It seems wrong to just offer heparin in pregnancy and nothing before you become pregnant if you have other symptoms as well as pregnancy loss.

I'm sure you will make many friends on here. Xx

[jessielou]

Hi Kelly

Thank you for sharing your story hon, so sorry to hear of your losses, I understand the pain and heartache! I'm fortunate now to have three beautiful children who survived in spite of no diagnosis and treatment.

Thank goodness they've tested and diagnosed you! Hopefully with treatment your dream of having a child will come true, will certainly be plenty of us on here, on your side and cheering when it happens!

Have you mentioned other symptoms to your medical team and are you on aspirin, warfarin?

I feel for you hon, so young and been through so much! Sending you big but gentle hugs,

Love Sheena xxxxx

[GinaD]

Quite a story. I wonder if cytomegalovirus virus, which is, ( if memory serves --someone correct me if I'm wrong,) the virus which causes chicken pox is a factor in developing Hughes? I spent one hellish summer when I was 4. Mumps, 3day measles, German measles, and then -- hard upon these previous infections --chicken pox. And I nearly died of chicken pox.

I was laying on the couch, all trundled up as typical of being sick with stuffed animals around me, the TV showing cartoons, an array of picture books beside me, and mother in the next room, checking on me often in between cooking. When . . .I began to feel most strange. As though the couch was going to swallow me, and pull me down deep, deep, deep into the earth. At first I thought this impending journey to be rather exciting. Then, from some deep part of my brain there arose a counter feeling that this was so WRONG! That I was dying and the only way for me to live was to cry out. And, unexpectantly, it took all the strength I had to make even the most pitiful of noises.

Mother was in the kitchen, not 20' away,and she came rushing in, her hand was placed on my head, then she began peeling the blankets off me while she called for help. I was placed in a bath tub of cold water -with ice cubes from the fridge thrown In as well -- while Father was summoned from the hospital.

I recovered, but for the rest of that summer I was limited as to what, and how long, I could play outside. Sigh. ( I hated indoor play. Give me holes to dig, bugs to catch and smelly dogs to play with. dolls are so bor-ing!)

And now I wonder -- ( I should probably post this as a separate question,) should I get the shingles vaccine? Does my close shave with chicken pox mean I am more, or less, susceptible! And will the vaccine aggravate myHughes antibodies?

Take care. We are all here, ( web wise,) for each other.

Gina

[3boys]

I am so sorry for your losses. I had 3, then had my third son. I know it is all so much to take in, I actually have a long medical history too. My prayers are with you. If you have any questions pls let me know.

[MJLS]

Sorry for your losses, I understand what you are going through. I'm 21 and find it daunting the thought of trying again for a family, so were in the same boat. Finger crossed for you x