- Fetal Medicine Unit - University College London Hospital
- United Kingdom
In 2010 at 20 weeks we were told our baby boy would not survive because he had swallowed all of his amniotic fluid and had cysts in his kidneys and his lungs were not going to develop. We had to face the agonising decision whether to carry on or not even tho we were told there was 100% chance he would not survive - the professionals thought we were dealing with PKD.
We made the heartbreaking decision to induce the pregnancy at 25 weeks as things were looking really bad. We were left feeling like we had no choice by the drs. So Cameron was stillborn on 2nd October 2010.
In 2011 we fell pregnant again - this time things started out well and things were looking good. until again 20 week scan. We were told the baby was losing fluid and it was the Cameron situation all over again. We couldn't believe it another baby taken from us. This time we were stronger and decided to go all the way to the end of the pregnancy no matter what.
We got to 33 weeks and there was no fluid left around Trinity apart from a little bit around her mouth. Her lungs (we were told) had not developed, her abdomen was so swollen and there was possibly a problem with her brain as well as her kidneys. At 34 weeks Trinity was Breech and they had no way of turning her and the only way they could forsee a 20/80% outcome was via a vertical caesarean section which was dangerous for me also being blood thinning medication.
they induced me at 35 weeks so I could deliver her vaginally eventhough she was breech (it was the safer option). But the hospital would not do anything to save her even if she was born with signs of life as we had opted for a vaginal delivery at 35 weeks rather than a vertical C-section at full term.
Trinity was born crying and was breathing but the Bas***d hospital would not help I pleaded and begged but nothing. Trinity died 4 hours later in our arms.
We had a minimally invasive post-mortem carried out to find out what the cause of death was. It appears that my husband and I are carriers of a rare genetic disorder called Bardet-Biedl Syndrome.
I am pleased to say we are now 12 weeks pregnant with our 3rd child and are anxiously awaiting CVS testing to determine if this baby has Bardet-Biedl Syndrome (BBS). If the baby does have it we are going to fight tooth and nail for all the medical help we can get. There are millions of people in the world who have this condition and are able to lead a normal life.
Why should we kill our baby because Medical Professionals don't know what they are dealing with and refuse to help????
We have set up a petition in honour of our two angel babies Cameron and Trinity and also to help our unborn baby.
Please take the time to read, sign and share if you can all help is gratefully received.
This time round we are not going to be bullied by Drs who know very little about this condition and plead for people to help us let our baby live!!
Bardet-Biedl Syndrome is an illness that can be lived with and we are aware of the problems that we face. But are committed 110% to our child.
We want to appeal to the healthcare professionals to help our baby and do whatever it takes to help.
The Save our BBS Baby petition to Fetal Medicine Unit - University College London Hospital was written by Lisa Lee and is in the category Human Rights at GoPetition.