Hydrocephalus - Our baby has now been born - Birth Story on page 18

hope your being well looked after and everything is going well thinking of you, your partner and your little princess x x x
 
Sammy you are so strong, what an incredible journey you have been on. It is awful the lack of support you have received. I hope with all my heart you are okay. Kisses for your little girl. xx
 
Yes me too - I really hope that you are alright and being supported - big :hug:
 
You and your family are in my thoughts.
Like others have said I too hope you are being looked after.
:hug:along the way
 
I don´t know if I will be allowed to post my Birth Story in the birth story section. We are in the process of creating a "Born Too Soon" page for our baby and I will send the link when we have completed it but this is what happened....

The Journey to Hospital

We left for hospital, we still hadn't really made our decision but we were going anyway even if we turned round and came back. We had already called the Neurologists that morning in Belgium for a second opinion but they were unable to help our little baby and now we were going to try the UK. We finally got hold of Dr. Farrell, explained the situation, the results we had been given and we asked him if he could help us. He told us the same as the Neuro's in Holland and the UK that at 24 or even 26 weeks, for her to be born and expected to cope with prematurity and Hydrocephalus operations that this would be too much to ask her for. That her condition was very far advanced, in the bottom end of the severe category and that she would be sure to be born with brain damage if not from the Hydro, from some other complication during birth. I told him of the success stories I had read, of baby Tegans story, who he treated, but he said if he was to give us odds on her not being brain damaged they were to be 5 - 10% chance, for her to born with severe damage 75% certainty, with some brain damage 90-95 per cent. He explained to us that although some people take this chance and beat the odds, that the stories we read are rare. That of all the people that take that chance and of every story you read that you don't read the other stories of all the people that have risked it and it didn't work out or their children died anyway. He said that "normally" parents would choose to end the pregnancy at this stage and that even if the child did not appear to be affected after birth, that the chances that somewhere down the line, even in a few years time, that some problems would be there, creep up on us, that we had to think of our other 11 year old daughter as well. We thanked him for his support and kindness to answer our questions and ended the call. We cried.

We arrived at the hospital in a numb state of mind... we got upstairs to the delivery floor and were asked to sit and wait. Our appointment was at 3pm. I held back the tears as pregnant women about to give birth waddled past me, smiles on their faces, holding their tummies, soon to be expecting their little ones in their arms, for me soon that was to happen too but it wouldn't be a happy ending like theirs, it would be a sad loss. At 5.45pm a doctor came and took us to a room, apologised for the delay and consulted us briefly before we were seated back in the corridor again.

Finally at 6pm we were shown to a room that we were to sit in and wait for the counsellor (it was procedure) She arrived, I could barely look at her. She started talking to us about how we wanted to bury her, our options. I looked away, stared out the window, in ignorance if you like. She was asking me questions but I wasn't listening. Forced into answering I told her "How can I talk to you about burying my daughter when she is kicking so hard inside me? She isn't dead yet you know and therefore I cannot talk about this" She left shortly after that, me thanking her softly before she went. We were left in the room alone, crying.

We were silent in the room for a while and this was killing us so decided to go outside to find some magazines. It was freezing outside but we found the train station nearby and got something to read. In some strange way everything seemed to be normal outside... I hung onto Allan, waddled along pregnant... outside it didn't appear real, that in a few hours we were to give birth and say goodbye to our baby daughter. I wished I could stay outside, away from reality.

The Start of the Induction Procedure

Friday 8th January 2010

At 6.30pm we were taken to a our own private room where we would give birth. Another bed was brought in for Allan, my husband, and I got changed into my bedwear. At 7pm the doctor on shift came in and introduced herself and explained the procedure. She was very nice and compassionate and seemed a caring person. She sat beside me and felt my uterus and then inserted two tablets inside me. She said it might take between 24 and 36 hours for them to work but everyone was different. At 11pm the procedure was repeated as there was still no change. This would happen every 4 hours but not through the night so this was the last time I would take the tablets until the next morning. I was given two sleeping tablets but had a restless nights sleep regardless.

Saturday 9th January 2010

We were woken early so that they could give me some more tablets, they gave us some time to wake up properly. At 8am the doctor came round again and checked my cervix, no change, and gave me another two tablets. The nurses and doctors were all lovely to me telling me to just to call them if there was anything I wanted or needed. Allan was being really supportive as well, offering to fetch me drinks and magazines or something to eat. We waited.

At 12pm I was supposed to take some more tablets but nobody came. I heard babies crying, obviously having just been delivered... I cried myself knowing that I would never hear my baby cry. I hadn't feel her move today and wondered if she was even still alive, a little later I was to feel a half hearted kick, I didn't know it but this would be the last one I would ever feel from her. At 1.45pm the doctors finally made it to my room to give me two more tablets. My uterus was starting to feel tight now and uncomfortable but there was no pain, except in my heart. The day went slowly until the next round of medication was inserted to induce me, this was at around 7pm. The doctors could now feel my uterus was tightening and opening, there was some pain now, although not much. They explained to me that the birth could happen very quickley. That all of a sudden my uterus may open and the baby could come out without me even pushing. I felt scared. It might all happen too quick for me to be able to take in. I was offered an Epidural and decided to take the option as I was firstly worried that if I refused and the pain got worse that the Anaesthetist would not be available when I needed him/her or that it would all happen too quick and it would be too late to have an Epidural then. Twenty minutes later she arrived. An IV drip was inserted into my hand, my blood pressure taken and my temperature. My blood pressure was low and my temperature high at 37.8 and I was told I had a fever. An Epidural was then inserted and there were tubes and pipes everywhere. I felt scared by all the monitors and everything which was happening to me all at once, i felt confused and all of a sudden everything started to become even more real.

Allan went out for some fresh air, he came back and said that he had been to the "Silent Room" and lit a candle for our baby and written some words in the book. I thought this was a lovely, unprompted gesture.

After what seemed like an eternity, everything was in place... the nurses left and I was in no more pain. I could feel no more kicks and I wouldn't do even if my baby was alive because the Epidural would stop me feeling her. It seemed the end already and I felt sad and gutted that I would never feel her inside me again.

At 11pm the doctor returned to give me two more tablets. She said she could enter my uterus with one finger now, whatever that meant, but she didn't know how long it would take, everyone was different as she had already said. The nurses continued to come and go, offering us drinks and food, support and compassion... sometimes stopping for small chat, some words of encouoragement, listening to my story and how hard this decision has been to make for us both. They were treating us really well but it didn't and couldn't compensate for the real reason we were there and for the outcome we were shortly to expect.

I was offered another two sleeping tablets but I was worried that I would wake up and she would be there, already born, that the sudden opening and not having to push would have happened while I was asleep. I was assured that this wouldn't happen, that when she was ready to come then I would feel pressure and that this would wake me up. I fell asleep.

Sunday 10th January 2010 - The Birth of My Beautiful Baby Daughter

At 3.15am I woke up to an unusual feeling... a pressure I had never felt before. It wasn't bad but it was scarily different. It was coming and going but quickley. I called to Allan but he was asleep so I left it for a while. It continued to happen but i didn't know if this was "it" I called Allan again but he was still asleep and didn't wake. I thought I would leave it a while longer, see what happened. I soon found out I was not going to be able to leave it for long as the next cry was in pain and Allan woke up. I asked him to fetch the doctor, something was happening. It seemed like forever before the doctor arrived. I thought the Epidural must need topping up as I could not understand why I was in pain. I asked her if she could top it up and she examined me. She said I was ready to give birth and I would have to push through the pain now, that there was nothing they could give me that would stop this sort of pain. I was asked to push.

I gave a couple of hard pushes, there was a huge rush of water and I was told to stop... she shot out, she was here. I couldn't see anything but watched as Allan held his hand to his mouth and looked away in shock. The doctor asked him if he wanted to cut the cord but he shook his head. The doctor looked at me and asked if she should cut it, I told Allan he should really do this as if he didn't he might regret it, that she was still his baby daughter. He agreed and cut the cord in tears. I was asked if I wanted to hold her, i nodded my head. She was placed on top of me. She was the smallest thing I had ever seen in my life and she was beautiful. I was told she was born sleeping. I wasn't surprised as I was sure she had given up the will to live before I had the Epidural when I couldn't feel her.

I held her in my arms, cuddling her, wanting her to wake up and cry like I had heard all the other babies. I knew she could never now do this. I looked at her little body, all perfectly formed with the smallest hands and big feet like we had seen on the scan pictures. Her little head was obvious to the Hydrocephalus but you could not see that it was mishapen from the front and it didn't matter to me because she was perfect in every way no matter what. The doctors were surprised that she had eyebrows.... prominent dark ones. She had fingernails as well We could also see she was to take after my husband and have dark hair and we could see her little eyelashes. She had my husbands nose as well. I wished I could see what colour her eyes were but she had them tightly closed and I wasn't going to force them open. We were asked if we wanted an expert to look inside her head, to tell us the exact reason for her death but i said I didn't want her cut apart, we knew the reason for death and to find out in intricate detail why it happened, would not bring her back.

I lolled in and out of sleep for the next couple of hours, exhasted from the trauma and seeing that our little baby had died. I hoped I would have the chance of seeing her try to catch her first breaths and that is why I never took the pills before the induction to stop her heart, to kill her. I was told she would have felt no pain. That the tablets would have slowly restricted her airflow in the umbilical cord and she would have have slipped peacefully into unconsciousness before the birth, there would have only ever been a small chance she would have been born alive and she would have only lasted for a few minutes. We knew this already... I was never going to subject her to any pain whatsoever, she never deserved that.

Two more tablets were inserted into me so I could try to give birth to the placenta which had not come out. They repeated this over the next few hours and I kept trying to push but nothing was happening and they told me I would have to go into Theatre to have it surgically removed. I didn't care anymore... things could not get any worse than they already had done anyway so I was never expecting to be let off easily by something actually going right for a change. They prepared me for surgery and I was wheeled down there. They decided to use the Epidural for pain relief and therefore I was going to kept awake through the whole procedure which I didn't really want but I didn't have the strength to fight them and so I just let them do what they had to do.

They had to top up my Epidural to make it five times stronger that the one that I had been given in order to give birth with so I would be able to cope with the pain. I suddenly felt really scared and worried that perhaps something would go wrong and I would not make it. Or they would not be able to get it out. My legs were put in stirrups and I had so many things pushed inside me I can not even imagine what they all were. I could feel the pressure, although no pain really, just the force of the instruments on my organs made me feel some sensation.

Finally, it was removed after what seemed like forever and I was taken to the recovery room. I lay there while they poked and prodded me some more taking my blood pressure, checking if the Epidural was wearing off, my temperature. I was getting tired of the fussing round me and just wanted to get back to my daughter, to hold her, to tell her how much I loved her and how I tried to do everything I could for her but they wouldn't let me go. My body from the waist down was completely immobile. I couldn't move or feel a thing, it was completely numb. I was covered in heated blankets due to my fever and my temperature had risen. Another patient got wheeled in next to me and I heard the crying of her baby, heard her partner talking to her. I felt dead inside, wishing she would just go away, feeling resentment that it was not me in her place.

After about thirty minutes I was taken back to my husband and baby. I felt anger now, at everyone, the world in general, for taking my little girls life. I snapped at Allan, ordering him to do this and that, reprimanding him when he didn't do it correctly. The nurses continued to come in and out every five minutes asking us things, checking me, offering us things but i just wanted them all to go away and leave us in peace so I could greave for my baby. Allan asked them kindly if they could leave us alone for a while and the place was finally quiet.

I held my daughter, took pictures of her... many, many pictures. While I was in theatre the nurses and Allan had taken some ink prints of her feet and hands and put them on a lovely pink card with her name and weight. We called her Shaylee, it was a name we all liked from quite a few weeks ago, I remember reading it out and we all said we liked it. We never discussed another name after that and so in my head, she was always "Shaylee". She was 620 grams (1.36 lbs)

Later Allan mixed some plastercast that I had previously bought from a shop and we took some hand and foot prints. I was so scared pressing her tiny hands into the mixture that I would break her and then I would never forgive myself for hurting my innocent daughter, but I didn't. I wrote her name and date of birth on the cast with a small needle, not that I was ever going to forget either.

I put the two cuddly rattles and small cuddly sheep next to her body to keep her warm and wrapped her in my own fluffy pink blanket. Her skin was so fragile that through the birth and being handled it was starting to peel a little in places and although she could not feel the pain, for some reason i could feel it for her in my head. I thought it must be sore and nothing made me think that she could not actually feel it herself. I kissed her little head and told her how much I loved her, how much I would always love her and how I would do the very best I could for her while we were together and when we are parted.

We had to decide what to do with her little body... there was a few options. one was to have her cremated with some other babies at the same time which could take a couple of months to do. In the meantime she would wait in the hospital Morgue, alone. I ruled this option out straight the way. In my eyes she deserved only the very best and I was not having her burnt with other babies and then thrown away, this was NEVER going to happen. Another option was to have her buried or cremated and we could therefore take her home laid on some ice and make our own arrangements as long as this was done within 4-5 days. We thought this was the best thing for her.

We decided to have her blessed by a Pastor although there wasn't a specific one for the hospital so they called one in for us. He brought with him a bunch of flowers that were send for us from the Congregation where he had held a service earlier that morning. I thought that was a really nice gesture. He lit a special candle and blessed our daughter using a small shell to put the water in that he got from his brief case. The blessing was in Dutch and for me it took away the whole personal touch as I could not understand it but I recognised The Lords Prayer at the end of the blessing and found some comfort in understanding that.

I had the epidural taken out, I was trying hard not to cry, to try and keep still. I was told as soon as I could stand and go to the toilet/shower that I could go home. In pain and barely able to walk I shuffled to the shower room, just wanting to be able to leave the hospital now and spend some time with little girl alone, at home. I nearly passed out in the shower and everything went blearly for a minute but i continued and went back to the room to get dressed. We agreed for another expert to just look at her externally, no cutting, no prodding, just a visual look at her. They took her away and returned maybe half an hour later and said they had taken a sample of her umbilical cord to test for hidden genetic problems and wondered if they could take a small tissue sample from under her arm to test further and eradicate any problems since sometimes Hydrocephalus can be caused by a genetic incompatibilty between the two parents. We agreed and she was taken off again, to return a few moments later. Meanwhile, they told us by looking over her visually they could find no other problems with her apart from her head, that otherwise she was a perfect little girl. We knew this already.... to me she would always be perfect.

The catheter in my hand from the IV drip was finally removed after waiting for an hour... the nurses were all busy with deliveries of other peoples babies. I felt we were more important. Yes, I had given birth to my baby but she wasn't alive, they would all have healthy babies so why should I have to wait to leave the hospital. We were given her birth certificate and the doctors and nurses all came to say goodbye. I asked them if they had any premature clothes I could dress her in but they didn't. I knew it was cold outside and although she wasn't alive, I didn't want her to feel "cold". They put my baby in a tiny patterned box with wrapped in her blanket. We thanked them for their help and understanding and the lovely way they had helped us through what has been the most diffucult time of our lives. I was wheeled to reception in a chair while Allan fetched the car. The nurse spoke to me about leaving, told me how hard it would be on the outside world now, how difficult it would be to deal with seeing other babies and pregnant women. I already new this but it was nice to hear her sympathetic words, to show she cared.

Leaving the hospital and the next 24 hours

I could barely walk, I was in so much pain. My pelvis felt like it had been crushed in a vice and I felt sick. I carried my little daughter in her box and thought how cruel the world was, I should have been carrying her out in a car seat, looking down on her feeling proud of what we had made between us. Thing is, I was still just as proud of her as I would ever be, alive or sleeping, she was ours and nobidy could ever take that away. She was just as beautiful as anyone elses child in my eyes.

I asked Allan to make a detour to Rotterdam, to the Alexandrium. There was a place outside called Toys XL or something and I wanted to find her some clothes to wear. He asked if i felt well enough to do this, I didn't but that didn't matter, she was our baby and I wanted her dressed to reflect this, i didn't care how "I" felt. We arrived and it was busy, children everywhere with buggies and prams. I tried to look away. I realised as I tried to start walking that I couldn't really. I couldn't move my hips. I made some slow steps into the shop, walking like I was handicapped. It took a while to find the Dolls section due to my slow speed but I did and Allan and I carefully selected two pink sleepsuits for her from the "Baby Born" collection. One was a fluffy fleece pink one with a hood, long sleeved and the other was a pink short sleeved sleepsuit with a hat. I also bought her some little doll nappies, as she was still leaking some Meconium from her bottom and I didn't want it to soil her clothes, ironically they were called "Baby Alive" nappies.

When i got home I carefully dressed her. It was difficult as it was easy to damage her skin but i tried the best I could. I had to trim the nappies at the bottom part so that they would fit her comfortably, they came right up to her chest but at least she would be clean and keep her dignity. The clothes were a bit too big but were the smallest we could find. She looked absolutely gorgeous and if ever there was a baby that looked just like a doll itself, it was our baby Shaylee. She looked warm now. I wrapped her in her pink fleecey blanket and held her in my arms for hours.

Afterwards, Allan collected my older daughter who had been staying with a friend throughout this ordeal. She is a strong little girl and always insisted she held and said goodbye to her sister, the sister she was so looking forward to pushing around the village. We could not deprive her of that, of saying goodbye if that is what she really wanted to do and I supported her on that decision. Allan collected her and brought her home. She walked through the door and her first words were "Oh, she's so small. Her face was ridden with grief, although she never cried as she held her little sister in her arms and kissed her head. She wanted to see her little feet, it was not easy dressing Shaylee because of her delicate skin but somehow I felt I had to show my daughter her feet as I didn't want any regrets later so I carefully undressed her like some child protecting their favourite doll and showed my daughter her little body before re-dressing her again. My daughter then went back to stay at her friends house, kissing her sister on the head before she went.

Allan arranged for someone to come to the house from a funeral place. I was in a great deal of pain, losing blood and could not even sit comfortably as my pelvis hurt so much, i guess it was from a combination of the Epidural, birth and removal of the placenta. I was in agony so I left it in his capable hands and took myself and Shaylee to bed. I placed her in her blanket carefully on the pillow next to me, not being able to take my eyes of my beautiful daughter. She looked so peaceful lying there next to me... I fell asleep.

I awoke at 3.15am, it was strange as this was the time I awoke in labour teh morning before. I looked for Allan but he was not there. Shaylee still lay there, asleep in his place. I went upstairs and he was asleep on a spare mattress. I decided not to wake him after the weekend we had all had to deal with. I sat on the edge of the bed and wept before falling asleep again.

Monday 11th January 2010

I woke up to Allan coming in for his work clothes... I admired his strength although i knew inside he was in pieces just like me. I knew he wasn't ready to return but he felt he had to. He told me that the person from the funeral that came to our house last night was not appropriate and that he was just talking about money, trying to push us to sign things and never even asked to see Shaylee so he promptly asked him to leave and told him this was not going to work out.

At 10.20am, my daughter and Allan walked through the door. My daughter's school had called as she felt sick. I guess the inpact on her was more than she was ready for. She briefly held her sister, kissed her and went to bed. Allan went back to work promising to check on me at lunch time but arrived again shortly afterwards to say he could not handle going into work and had explained to them that I needed him at home more than they needed him at work right now and they allowed him some time off to greave for his daughter. He set about calling some funeral places and another person will come around this evening.

I am now sitting here with my little baby girl, I am wriggled with pain and typing through bleary eyed tears but I had to write my story since I didn't want to ever forget my journey with her, from beginning to end. I will never forget my beautiful daughter and I cherish spending every moment with her right now because I know soon she will be taken away from me forever, first her soul was taken and soon her body and then I will have nothing left but memories to hold on to.

R.I.P Shaylee, we love you with all our hearts sweetheart.

Hugs and Kisses for always,

Mummy, Daddy and your big sister Savannah xxxxx
 
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I dont really know what words to write, I am grief stricken for you. I wish you had never had to go through all of this but I hope you can heal spiritually and physically quickly. Thankyou so much for sharing this, I wish you all the luck in the world for the future xxxx
 
Sammy, there are no words.. You and your family are in my thoughts and prayers :hug: I am so so sorry for your loss.. Rest in Peace Shaylee x x
 

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