We lost our 7 month old daughter few weeks ago. Here is the full background. Apologies for the long winding post.
My DS was born in 2010 when I was 26. He is perfectly healthy. Due to job assignment of my DH, we moved to overseas in 2014. In 2018 we started planning for a second child. I eventually conceived in May 2019 but ended up in chemical miscarriage. Later in that year I was pregnant but had a miscarriage at 13 weeks. There were no proper reasons found for the mc. During the entire period of the first trimester I was bleeding and eventually my cervix was open and the baby could not be saved. In 2020 I conceived again and I started bleeding from day 1. As a precautionary measure, the doctor carried out Cervical cerclage (stitching the cervix) to save the pregnancy. In the second trimester the bleeding stopped which was a positive sign. In the 20 week scan everything looked normal, but eventually my baby started measuring small. The doctors confirmed that I was carrying an IUGR baby. We also did NIPT but the results were negative. MY DD was born in July last year by elective C section (at 36 weeks). Due to her small head circumference, a lot of tests was carried out at birth but nothing was conclusive, except the fact she had bilateral congenital cataracts. We decided to come back to the UK to carry out the operation in private as the time line was very short, i.e the operation should be carried out within 3-4 months from birth. We relocated back to the UK , and within 1 week of our arrival her condition started deteriorating due to an infection (Strep B), as a result of which she stopped passing urine. She was in intensive care unit for several months undergoing dialysis of kidney and finally she passed away due to renal failure. The renal team has confirmed that she had Nephrotic Syndrome. During this period the Genetics Team have carried out some tests and there is an indication of gene mutation. A further detailed test is being carried out at the moment to understand which genes have played part in the cataract, small head and kidney issues.
We are devastated due to this traumatic incident which has created a huge vacuum in our life. We feel like we should not stop thinking of another child but at the same time we don’t want to go through the same experience. It also has a knock on effect on my son who is about of start secondary school from September.
A lot of things have played part in the traumatic experience which we had to endure as a family. Firstly threatened mc, then genetic mutation, infection and finally the loss. There is no way we can start planning for a second child without a proper medical consultation in the decision making. We are thinking of consulting a Gynaecology Consultant (while waiting for the Gene results to come) to find out the root cause of the previous miscarriages and multiple 'threatened abortions' during my pregnancy with DD last year.
What are the chances of genetic mutation to happen again. What are our options of having a second child after all these happened to my DD. Even if we found the genes which played part in my DD’s condition, there is always a risk that the same mutation could happen or some other mutation could happen this time due to my age (I am 37 now).
I am looking for 100% assurance through medical intervention if we proceed to plan for another baby. Can anyone advise how to we proceed now. Any recommendations of Gyne consultant in London who can support our decision making and support future pregnancy. I am not sure to what extent we will get support from NHS.