Pregnant/Trachelectomy ..a Broken Heart

This is maybe the saddest words that I will write of my life, this is the hardest chapter.

It has been 5 months and four days since my world ended. Most of you as I heard the word "I am afraid to tell you that you biopsie has shown signs of cancer..." that it happned to me back in January 2014, then I was told to get ready to fight may be the biggest battle, but believe when I say the biggest battle is to live after what it happened to me on November 2014 at [name of hospital removed].

After to go through the medical examinations, I was told that my lymph glands pelvis will be removed to avoid the squamous carcinoma cells (cervical cancer) to spread and to find out if the lymph glands were clear or not, well I was booked for the 14th February San Valentine, my romantic treat for that date was to be sent home because there was not beds at  [name of hospital removed], booked again for the 21st February, when I woke up I realised that the surgery did not took place I was so scared I kept asking to th nurse in the recover room she told me not to worry that the surgeon will explain, I was taking to my room and then the surgeon came, she told me that during the initial physical examination prior the surgery she noticed two bumps that it were not showed at the MRI scan, so she told me that we should wait for the biopsy of them. I was sent again home and at that time I thought it was the worst time of my life. The waiting time.
 
Let me tell you about me, I moved to England in 1996, I have become a woman here, all my whole family live back home, I married, have a beautiful six year old son born here and divorced in this country, but you can understand that in situations like this how isolate, lonely I hvae felt. My son was the reason for me to fight until November 2014. Well my gynae oncology team was very good and they speeded up the laboratory to get my biopsy results quick, my partner was so worried of two lumps ..what was the chances to be good or bad?
When i received the call from my keynurse my hands were shaking, the most important phone call, after a few seconds I heard ..." Good news...they are two cysts, we are going ahead with the surgery on the 27th February to remove the lymph glands".
I was so happy my first battle, on the 27th February my lymph glands were removed, then another waiting time to find out if they were clear of cancer or not; to be clear it would mean that I could get a new procedure named "Trachelectomy"my cancer was taking early and I always wanted to have another child.
 
The recovery was hard, after four days I was told that my lymph glands were clear and we were going ahead for the Traquelectomy on 7th March, even said that I was todl by my surgeon that she could only do perform the Traquelectomy if after to be at theatre she could confirm that my uterus was clear of any cancerous cell; well when I woke up I was still more or less under the effects of the morphine but I was so happy when I was told that my uterus was clear and that the "Trachelectomy was done 100% a success".
My partner was so happy, it had been hard for us a couple, for my family because so many of my close relatives were so convinced that I should have a hysterectomy, that I should feel lucky to be a mother to my six years old. I read so much since I was diagnosed, about young girls that will never become a mother, about some girls late diagnosis resulting in death.
 
I cannot describe the sadness and hapiness that I felt, hapiness to be caught on time and be able to be a mum, infinite sadness to think about the girls and families who have not been as lucky as I was. 
 
Well, my recovery time after the trachelectomy was doing research, I realised that it was so littele research done in patients like me, and I started to think about my scheduled September 2014 review after that one i could get pregnant.
 
On May, I had had one mestrual period since the Trachelectomy but I was feeling sick and not well without reason, one of my friends suggested "may be your are pregnant" "I could not be, we had only intimate twice since my surgery...." I do not why, but I did the test, a pink test, to my surprise two lines came out...I WAS PREGNANT.....on the 23rd May.
 
I went to see my partner at his workplace, I told him he was happy but worried, I cried..I was so lucky....Well after booking an appointment with my GP' and my gynae oncologist I was told about all the risk, a long list.
I was cared by a Senior Consultant at [name of hospital removed] who has been cared in the past of another patient with Trachelectomy so I was once again very lucky, she was exceptional through every week, so hard to pass my 24 week, I could miscarriage at anytime.
 
My baby was a fighter like mummy, day by day, I was so happy, I decided not to but enaything because the protocol was to deliver the baby at 33 weeks if not before, with risk of pre rumpture of membranes due noexistent of cervix.
 
On the 31st October, at my 27 weeks and 3 days I broke waters, because i was under 28 weeks by medical protocl I was supposed to be send to a LEVEL 3 for  [name of hospital removed] was Level 2 so they could only transferred me to [name of hospital removed]. At my arrival there, with a midwive from [name of hospital removed] with all my medical notes saying and stating me my management deliver plan, and all the list of risks involved. The register doctor was getting me ready for theatre, Neonatal team came to speak to us, Anaesthetist spoke to me, but then the Consultant in charge came and stop everything, it was Halloween weekend...How to forget my worst nightmare.
 
I can only feel disgusting in my guts, that I trusted my life and my babies' life under the care of the Maternity Services at  [name of hospital removed], from the moment that I got there I was told that they do thing differently when I told them how worried I was because i was told by me Senior Consultant at  [name of hospital removed] that my baby was protected by two gates one was nonexistent the cervix, and the second one was broken the waters, so the baby would be delivered as soon as possible but at  [name of hospital removed] they sadi that any woman could get to 33 weeks like I was normal when I was not.
 
The [name of consultant removed] did not only delayed the deliver of my bay, my beautiful baby girl, ELizabeth I named because she was my God Promise, but this arrogant consultant who did not bother to read my notes, neither any multi skill team discussed my case. I hold responsible [name of hospital removed] THE MATERNITY CONSULTANT STAFF at [name of hospital removed], [name of consultant removed] for the death of my precious baby daughter.
Yes they will hide behind a medical insurance but the reality is that it was not the news that I had cancer, or the posssible doubts that all the cancer patients we have, ..would it come back? how will I tell my six years old son? Oh, God I need you to give time, time to be here for him...My worst battle is to fight for the rest of my life with the thoughts that I did not protect enough my daughter from these people with long courses, medical specialties on their curriculum vitaes.
 
My worst moment it was not when AFTER THEE days a midwife run out of my room to get a doppler because they could not find ELizabeth's heart beat, neither when the [name of consultant removed] deliver my daughter's liveless body by a stupid cesarean the one that they supposed pto perfom on me three days before when my Elizabeth was alive, the worst moment was at the creamtorium when I looked to my Eduardo, my six years old son crying when the curtains were closed to incinerate his baby sister.
 
I have gone through a lot pain since last year, but I did not need to go Siria, or to any third worls to feel the worst pain to describe.
I was patronised by one of the "star Consultants [name of consultant removed]" at the Maternal Services at [name of hospital removed], she said" oh..but you know..the woman's uetrus is the best place to devlop the pregancy, to keep the baby...she was too early 27 weeks..." My daughter did not hold a chance with these kind of vain and arrogant consultants, it was writing over all my medical notes that I am 40% more likely to develop bacterial infecctions due the nonexistent of cervix in my body.
We requested the full post mortem, It was a painful decision to take, to imagine her small body going through that, every mother will understand ..is was too much to bear, I desires to died, I did not want to feel more.
 
I was told my the same patronising consultant that this things happened, I was so in disagree... my daughter died because they abandoned us, they failed her.
The post mortem results are that Elizabeth died because of chorioamnionitis, is an inflammation of the fetal membranes due to a bacterial infection. It typically results from bacteria ascending from the vagina and is most often associated with prolonged labor.
Now my biggest battle to fight is to get JUSTICE FOR ELIZABETH, on the 5th November when I left [name of hospital removed], it was like soemone ripping off my skin, days after I google for information of the Hospital and I felt sick when I found an article of some midwives whistleblowing and asking for the resignation of the Senior Consultant/Head Midwife of [name of hospital removed], dated on April 2014 because they were covering up mother & babies' deaths and putting so many in risk. The Care Quality Commission at [area removed]audited the Hospital on July 2014 and they could not find any relevant faults.
 
Elizabeth died on the 3rd November 2014, my partner birthday was on the 8th November and my birthday on the 15th November. November was a month of happiness but from now I do not know how will I live through this every year.
 
I have a long journey to walk, as a human being, as a woman, as a mother...I have to hold my tears and hold my Eduardo so tight for all the hugs and kisses that I never could give to Elizabeth. They killed her....This story, my life story is to warn so many survivors of cancer, for anyone of you....trust your guts, trust your intuition, BE INFORMED or you could be living the life that I live full of remorse, living everyday that dates, everytime that I woke up for a second I think this is a bad dream but then reality shakes me, Elizabeth is dead, I would never hear her cry, laugh...just because a so well educated Consultant with a long list of specilaities did not do her job, did not honour her medical oath...TO PRESERVE LIFE".
 
It is hard to bear the death of a daughter or son, but it is harder when you know it was so avoidable. She did not deserve to died, I did not deserve to live feeling like this for the rest of my life until I die, my son has been through so much from an early age, divorcing his father, my pre and post cancer time, then this...a medical insurance cannot put a price to the pain that as a family, the distress that they have caused us. The 90% of the couples who lost a child do not live through as a family resulting in the break down of the realtionship.
 
The did not only fail to my daughter, to me that they push us so far from a happy family to a broken one, PLEASE DO NOT ALLOWED THEM TO HAPPEN TO YOU. I have questioned myself, blamed myself to trust them, to have in the first place the trachelectomy to the point that I know I need medical help to keep my sanity, but I am praying to God to help me, to hold together until I get justice, justice for what they did to me, to my family.
 
 
 
 
  
 
 
 
 

Thank you so much for posting this, I know it must have been very hard and I'm so sorry for all thot you have been through.

I'm currently in the process of deciding whether to have a hysterectomy or a trachelectomy and I feel that I would rather have a hysterectomy because teh risks involved should I fall pregnant following the trachelectomy seem too severe. I feel that your story has really helped to inform my decision.

Thank you so much for sharing and good luck for the future.

Dear Isabel, there is so many questions marks to my circumstances. it is terrible what it happened to me, but please do not feel  influence by my life story to decide if to have a hysterectomy or trtrachelectomy. Reading your post make me to realise that from the beginning I wanted to have the gracious to become a mum again, I understood my family' s worries about my decision to have a trachelectom,  Isabel there is not guarantees, once we are diagnosed stage 1, stage 3, any stage.. We can only fight this with our best thoughts, for our family, for our right to wish to be here as longer as we can. I would like to thank you because it is today reading your thoughts I know that I took the decision that items right for me at that time, and I will try to get pregnant and I will ensure whoever is my consultant that does the job, because as I mentioned in my previous post...when I was told I had cervical cancer I read and spoke to young girls that were told never will become mothers, some of them even had devastating effects in their relationships, some of them eventually will come to terms of it  but the emptiness will be there forever.

If you were doubting Isabel it is because like me you wish to have a child, I cannot and noone will tell you which it is the best decision for you. Trachelectomy has risks but the procedure was not  the reason why I had a stillbirth. I had a stillbirth because the consultant at the hospital that I was referred ignored my Management delivery Notes, ignored my medical historial and treated me as a normal pregnant woman, because her lacki of knowledge in pregnancy after Trachelectomy was obvious, I was a pregnant diabetes woman, with a background of cervical cancer, without neck of cervix, to her I was a number or someone transferred from another hospital she did not check with my senior consultant, neither with any oncologist ling oncologist, what do I know??? The consultant that delivered that fatal day my daughter told me that in his whole medical years which it was not a few only came across with maybe five ladies like me and I was his fifth. I agree that the age to have a smear test should be put down to avoid more deaths and I hope God guide me to bring awareness to NHS, professional and mothers who are offered a chance to preserve her fertility wishes, mothers who get pregnant after Trachelectomy because there is so much ignorance from the medical field how's treat our pregnancies. My bad luck that I was under 28 week when I broke waters because for four days, four days at my hospital... My baby would be delivered after having the second injection of steroids and  monitor from an incubator, because I was her biggest risk once I broke waters, any vaginal infection could get her and because they never did a vaginal.swab at the hospital We need to understand that if you go through a Trachelectomy and get pregnant please ensure you just do not get monitor, follow up by just anyone, because at the moment at the majority of any maternity services at any hospital have conquered pregnancies with diabetes, preclampsi,  ovaries cancer, fibromas, etc...there is so many studies, reseqrch on it....but there is a big gap at NICE guidelines and NHS about how to manage a pregnancy after Trachelectomy, actually there is not guidelines....  because the main risk is miscarriage at anytime, the risk or infection, and the risk.of pre rupture of membranes once you pass the 24 pregnant week the baby being premature but that is why there is so many good medical professional from the Neonatal field, on these dates so many multiple pregnancies are a success managed in a way that the babies are delivered premature, there is risk but every pregnacy has their own risks but that it is why a management pregnancy plan well elaborated and followed up by antenatal appointments and if your senior consultant has experience treating patients like us then the risks will be minimum what I experienced, because there are so many of them that have not treated anyone like us, Trachelectomy is a very modern procedure which at the moment is not well understood by obstetricians and someone it should put a generic plan for them to follow up to avoid any woman to go through what I did. Best wishes Isabel

Hi Debs,

I have never wanted children but the Trachlectomy was offered to me to preserve my fertility should I change my mind. Reading your story (although it's a very unique circumatance) and others like it, and other complications that followed the surgery has reconfirmed my impression that the trachlectomy isn't the quick fix that some doctors try to tell you it is. THere are risks invilved should I fall pregnant by accident that 'm just not happy to take, especially for someone who didn't want children to begin with. I'm sure it suits a lot of women well but I'm just not one of those women.

 

Best wishes for you and your family

Isobel

 

Hi Debs

I didn't want to read and run on you. I am so very sorry for your loss, it was very brave of you to open your heart and post your story and I am really sorry that this happened to you and your family. I wish you all the very best

 

xxx