the hardest decision

Mini Mel 6 comments
the hardest decision

hi all, it's been a while since i've been on the lime. so much so, i forgot my login. the article i'm going to write is going to cause waves, and more than likely upset some people. i am not going to apologise as this is very personal and before you judge, you may well want to walk a mile in my shoes.

my story starts/overlaps from a part article i wrote, so here goes.

just recently, my husband and i received a lovely, but quite unexpected surprise. we were pregnant, which blew us both away considering all the crap we went through with our first pregnancy. the timing was awesome too. a new baby that would be just shy 2 years difference from our toddler. that and the birthdate would be before june. (those in australia will understand this)

unfortunately, the waiting game started. due to my genetic condition neurofibromatosis (or nf1 for short), i have had many consults with a geneticist and decided to do a cvs (chorionic villus sampling) which i had done with my previous pregnancy. basically what happens is a tissue sample is taken from the chorion (placenta) at 12 weeks gestation, it's a form of prenatal testing for any genetic or chromosomal abnormalities. it is done using ultrasound and with a local aneasthetic.

at a time where a family, especially a woman, should be the happiest in her life. i had to detach myself from my pregnancy, as i did with my first. more so to protect myself if the test came back positive. something that is so precious, is stolen, and frankly never returned. don't get me wrong. i loved being pregnant with my first baby. it is the best accomplishment i have ever had. but when i was asked if i was excited about the impending birth the answer was "meh" with a smile and a shrug.

the 12 week date came, a wednesday and so did the day for the cvs. once again, the water torture ensued. drinking a litre of water and waiting for the test to happen. my geneticist came to the hospital and chatted with me and my husband before the procedure. we were called, and entered the room, where i was readied for the procedure. we watched as the transponder passed across my belly, and saw our little baby. a jelly bean with arms and legs. hubby left the room due to his fear of needles. so it was me, the professor, inturn and nurse. marianne was not in sight (nor was gilligan)

i was prepped,  and and belly had a drape placed over it. local injection in and sterile gel was placed on my belly. the transponder again placed on and the biopsy needle introduced. this one hurt like hell. the biopsy taken. i was asked to sit up slowly, then got cleaned up and redressed. waited for the nurse and was given paper work, and the do's and don'ts, and what to expect. i should have the results in the next 3 - 5 working days. hubby drove me home, as i was not to do anything strenuous for 24 hours. i went home and tried to relax but was in some severe pain. this was not like the last cvs.

the weekend came and went. we celebrated fathers day with my family. then monday came. a day where my mum takes care of our little man and i go into my gallery. everytime the phone rang, i jumped. 2 o'clock came the phone rang and it was roseanne, my geneticist. the news was not good, i had passed my condition on to my baby. my world fell apart. i locked the door to my gallery, sat on the floor and just cried. after a while, i rang my husband to let him know. he drove over straight away to pick me up, and we went back to the workshop. we just sat and hugged each other for a while, then rang the geneticist to get the ball rolling.

a decision that i had made at 13, long before i was sexually active, or had indeed met my husband was coming true. the condition stops with me. i was to terminate our pregnancy. the baby which i tried so much not to love inside me. an appointment was made for a woman's clinic the next day. i arrived and filled in the relevant paper work and was guided through the clinic by a nurse. as soon as i sat in the small room, i cried. she did her best to consiole me, and we went through the relevant questions. allergies etc. the doctor came in and checked out the paper work and halted the interview. i was too much of an aneasthetic and allergy risk. she rung king edward memorial hospital and spoke to doctors there. i was to be seen at that hospital, as it was safer for me. another appointment was made the next day, thursday.

thursday came, and so did my appointment. once again, i went through all the hoops of the hospital system (i am quite the old card at it) and the surgery was scheduled for the next day. i left the room to find my geneticist waiting to see how i was. again with the waterworks (how was there any left?) she hugged me and ushered me into a private room where we could talk. the one thing i can say is just how good i have been treated by the nurses and staff. the support has been so wonderful. a nurse came in to let me know that the surgery was scheduled for the first thing, and i was to be in at 7 am. do the usual fast, no food, no water. mum and dad took our toddler for the night.

the morning came, and we left for the hospital. the waiting room was torture. seeing the pregnant ladies sitting there, waiting to give birth to their babies. i was called, and readied for the surgery. details taken, paperwork signed, awesome t.e.d. stockings for those nasty deep vein thrombosis put on. then had the drugs given to make my cervix 'soften' and made to wait. about an hour went by, and i was taken to the surgery. i kissed my hubby goodbye. cried all the way to the room. they prepped me outside the theatre and wheeled me in. placed the pads on for the heart monitor and introduced the catheter. the nurses chatted to me, and gave me tissues. they tried to cheer me up and said that they would start crying too. the doctor held my hand and greeted me, promised she would take good care of me. the aneasthetic was given, mask was placed over my face and that was the last i remember of the theatre.

i woke up, quite some time later to be told i had lost a lot of blood. after a while i was wheeled back to the recovery room to a panicked hubby. i was pretty much off my chops. it took me a while to wake enough so i could sit. i was given some sandwiches and a drink. the chaplain came to see me, and we went through some paperwork. i was to have my baby cremated and a certificate to be made that showed proof of existance. we left and drove home.

the night was the worst, i still felt that my baby was inside me.

i was rung to let know my babies ashes were ready to pick up. so friday just gone, i drove to the hospital and meet the chaplain, with my toddler. we were ushered into a small room and a bag was introduced. inside it was the certificate and a small box with a purple butterfly on top. inside was my baby boy. we chatted and he wanted to know how i was. he watched me closely and noticed that even though i was in pain, my attention was at my child.

there is a point to this story, long winded as it is. i and others could stop this torture if the australian government would put pgd (preimplantation genetic diagnosis) under the medicare levy. it is a procedure that is done in conjunction with ivf. the egg is fertilised and when it is a blastocyte (has divided 8 times) a cell is removed and tested, if it shows that the egg is free from the pre-disposed genetic condition, it is then implanted into the woman. it is not designer babies. it stops a child having a life long burdeon, and takes the weight off the health system too. it is an expensive treatment, at about $2000 per treatment. this is over and above ivf. a luxery that quite frankly we cannot afford, as can't many other people.

i like to think i am a strong person. but this has broken me in a way that i cannot explain. i have gone through a lot of crap in my life with the nf1, and i would never want to have my children go through it. i wouldn't even wish it on someone i don't like. i am just so lucky that we have such a beautiful little toddler. he is such a fantastic little person and has helped me immensely through this. i would love dearly to have another child. but i don't know if i could do this again.

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Wednesday 21st September 2011 | 04:34 PM

This story is heartbreaking. Somehow, theism across the world still manages to cause difficulty in the legal and medical systems. It needs to be subjective, and if you do not want a treatment, that's fine, but if someone else does, technically it is discrimination to force your beliefs into someone else.

I understand it would have been much easier for you if you could have just had the blastocyte tested before it was implanted, it'd save you and the child a considerable amount of pain...

I hope you and your husband are okay, and that you can stay strong through this difficult time.

Warm regards,

Elliot x

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Wednesday 21st September 2011 | 05:31 PM

What a courageous and incredibly self-sacrificing choice! I can't imagine how difficult it must have been for you and your husband but I applaud your strength and resolution, and above all your compassion and love, to ensure that no child of yours has to suffer this debilitating condition. I only wish you didn't have to endure the heartbreak of terminating your pregnancy when it would have been so much easier to have tested before implantation. (((HUGS)))



Thursday 22nd September 2011 | 08:08 PM
14 total kudos

Hugs, Mel.

I'm so sorry for your loss and everything you've gone through. Even the strongest can be reduced to tears and fears and sadness when faced with a tough choice like that. I wouldn't say you're weak for having emotion about it. Certainly, there are many people who are past feeling. If you hadn't struggled with your decision and everything, then I'd wonder about you. A woman's body and emotions go through much preparation during a pregnancy, and if the pregnancy is terminated either voluntarily or involuntarily, it wreaks havoc on both mind and body -- depending on how far along the pregnancy is -- and your baby was fully developed, just still small. Under the circumstances I'd say your reaction was quite normal. What you've been through is nothing to sneeze at. I'm glad the hospital staff were kind to you. You and your husband and toddler will be in my thoughts and prayers.


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Kim OJ

Kim OJ

Friday 23rd September 2011 | 02:59 AM
122 total kudos | 1 for this comment

Thank you for sharing your story Mel.

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Saturday 24th September 2011 | 10:40 AM

You have certainly added another view that I can consider, All the best Mel

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Monday 3rd October 2011 | 05:32 AM

I am very sorry to hear about the pain this has caused you but it sounds like the right choice.

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