Claudia

mum to Vincenzo & Benedetto

07/01/2011

Buckinghamshire, UK

For me this story,  it is a little ironic to know that I write about my sons in a non-tangible place the internet, where their story will forever be ‘in the cloud’ – like my boys. So I will start slowly…..this is the story of Vincenzo and Benedetto, our sons.  It might well start with Once Upon a Time if you like…….I met my husband and from the moment I saw him I knew I would always love him.  This feeling hasn’t changed in the nine years we have been together.  We wanted to wait until after marriage to have children and in 2009 we got married.   Last year we decided that we were ready and so in May 2010 I tentatively came off the pill and, well you can guess the rest.  In August 2010 I used three pregnancy testers plus one of those really expensive digital ones to tell me that I was 1-2 weeks pregnant.  Just like that-wow!  Hello Little Sprout.

One business trip to Australia later and we were ready for the 12 week scan.

Early weeks - Like every first time lady, I am sure, I boldly entered that scan room convinced that I was going to see nothing.  The very kind Sonographer gelled me up and started to move the little device backwards and forwards over my tummy and after a brief pause said  “So, here is one of your babies, and, and, well – here is the other one”  Those were her words to us.   Our mouths dropped, my husband started crying and I muttered “Twins? But twins don’t run in my family”  the Sonographer smiled kindly and said “Yes, twins, please don’t be mad” hovering the scanner over Wallaby I thought how on Earth could anyone be mad about hearing they were having twins?  So that very first scan revealed Little Sprout showing as 9 weeks and 6 days old and Wallaby showing as 10 weeks and 2 days old.  We were too early for the 12 week scan and had to go back a couple of weeks later.

So the pregnancy progressed, health-wise I suffered from all-day nausea until week 12 but aside from that was healthy and fine despite my vastly advancing belly.  The scans however were drawing a different picture, but we didn’t understand this yet.  In my happy little world Little Sprout was consistently behind in growth compared to Wallaby because Little Sprout was a girl and Wallaby was a boy, I was convinced.  It had to be that after all Nuchal tests showed a 1 in 17000 and 1 in 15000 chance of Down’s syndrome.

Still they were trying to tell me something else but I couldn’t hear them and didn’t want to listen.  The Consultants were kind but their words were all fluffy so as not to shock I suppose, so I carried on in blissful ignorance.  At the 16 week scan that they need to refer us to more Consultants at Oxford.   I know now that the signs being indicated at the scans were not good, not good at all but it is so difficult to tell why, even for Doctors.

Off we went where, for the first time there was plain, straight talking.  They told us that Little Sprout was unlikely to make it.  That they couldn’t tell what sex he was because he had remained in the same energy conserving fetal position for many weeks and was making little movement.  The Consultants, three of them, told us that the ‘prognosis’ for this pregnancy was that we would come out of it with one healthy child – the boy, Wallaby (who we would later christen Vincenzo).  Little Sprout wasn’t growing, his Dopplers were reversed, there could be a congenital problem but it wasn’t his heart as far as they could tell.  They couldn’t tell us anything really except that there was nothing to be done and that he would probably die in the next couple of weeks.

Week 19 – Little Sprout still hanging on.  Wallaby also doing fine.  Being scanned at the Fetal Medicine clinic on a weekly basis.  My blood pressure started rising, and so enters suspected Pre-Eclampsia into this story. I have by now started working from home and told my Consultant to ‘take it easy’.

Week 23 – Something is wrong, Wallaby’s growth is now also slowing down, Doppler for one of the cords is showing absent flow. Consultant tells us not to worry, that we need to go to Oxford again to the Silver Star team to discuss early delivery.

Week 24+2 - New Year’s Eve, Oxford Fetal Medicine clinic.  A total of five Consultants were involved that day in what was described as a ‘very rare and unusual situation’.

Diagnosis: Severe Intrauterine Growth Restriction (IUGR).  We were presented with three options and the worst prognosis.

Prognosis - that this pregnancy would result in no babies.  That Wallaby’s absent Doppler meant that he was unlikely grow to a viable weight and currently had an estimated weight of 395gm (viable weights need to be over 500gm).  Little Sprout was still ‘alive’ so far as to say he had a beating heart but was severely compromised from the restricted growth.  His heart was beating but he was probably brained damaged, his estimated weight was a tiny 145gm.

We had to choose and so were presented with the most difficult decision of our lives:

Options: 1- Do nothing and let nature take its course.  2End the pregnancy completely. 3 - Opt for Selective Feticide on Little Sprout in the hope that it would keep the Pre-Eclampsia at bay and ‘buy time’ for Wallaby to put on enough weight to become viable.

The last scan photo I have of the boys alive is from the scan on this day, their heads lying side-by-side.

What a choice to have to make, it was 4pm on New Year’s Eve 2010.  We decided that we at least had to try to save Wallaby, considering the suffering that Little Sprout was going through and after many tears we decided: Option 3.  I won’t go into detail about this procedure but up until then it was the hardest and most distressing thing I had ever had to go through, I even asked my husband to wait outside so he didn’t have to watch. Little did I know that it could get worse…..

So the crying started, while others shed tears welcoming the New Year my husband and I consoled each other in our grief in the living room until, utterly exhausted, we went to bed at 10pm, not even wanting to see in another year.  Not caring for midnight to bring in 2011. I felt utter grief for what I chose for Little Sprout and my heartbreak at the decision that I had made, whether it was good or bad -  I was still guilty.  

Week 25With the hope, wishing and praying I visited the Fetal Medicine clinic on a daily basis for scans, scans and scans coupled with complete bedrest, I was signed off work – this was  now my life .  I spoke to Wallaby daily, willing him along, even my husband started touching and talking to the bump again, something that he had stopped doing for weeks when the uncertainty became apparent.  On the Monday all was looking good I felt him move, Tuesday I had a temperature but put it down to my sore throat which my husband and I had picked up.  Wednesday’s scan still showed Wallaby’s heart beating away, and I still felt him moving which was unusual.

Week 25+1 – Thursday 6th January 2011, no heartbeat.  I had lost them, both.  Despite everything we tried.  What happened to Wallaby?  I believe that Vincenzo wanted to be with his brother and simply couldn’t be without him.  They had spent 24 weeks snuggled close together and when Benedetto died, Vincenzo followed – after all who else was going to take care of his tiny little brother?

Friday 7th January 2011 at 25+2 I gave birth to my twin boys who were born sleeping.  They were two tiny, beautiful sons – Vincenzo (Wallaby) was born at 1858hrs weighed 280gm and was 23cm in length.  Little Sprout was also a boy much to my surprise,  named him Benedetto. He weighed 140gm and was 17cm in length was born at 1905hrs.

They were beautiful. Stunning, perfect boys that were like names in the sand to be washed away with the next gentle wave.

The Debrief.  I wanted to describe my better understanding of what happened as I believe it is important to explain that though Histiocytic Intervillositis (HI) was observed in both placentas it is generally regarded by healthcare professionally that this condition of the placentas, what causing the body to have the reaction to the baby and destroy the functionality of the placenta is still unclear but it is likely to be immune system related, so this is an autoimmune condition. There is simply not enough research and any research is difficult to conduct due to the delicate nature of pregnancy.  It was most certainly the fact that the placentas were not able to function correctly that was causing the IUGR and possibly the Hypertension.  I am also a carrier (that means that I have inherited it from one parent not both so I am heterozygous) of Factor V Leiden.  

Pre-Eclampsia has since been ruled out (to subsequently be brought back in on later meetings).  The boys were anatomically perfect with no chromosomal/ genetic conditions, this means that our boys were perfect.  It was the infection caused by the Selective Feticide procedure that ultimately caused Vincenzo to also die, this I must stress is also very rare (2% chance that this happens).

What does all this mean?  Well, it was a bit of a pregnancy plane crash, that’s for sure, the only survivors were the pilot and co-pilot.  There is no happy ending of any sorts yet I’m afraid, sorry.

They are my, our everything and though I appreciate that these are early days cannot seem to see past this yet.  I feel that I have denied the best husband in the world two perfect sons.  I am sure that I will spend the rest of my life trying to resolve that fact.  

We went on to lose Gabriele 9 months later on 9th October 2011

 

You can reach Claudia at kaosfusion@gmail.com

You can also view Claudia’s blog at

http://vincenzobenedetto.blogspot.com/.

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Comments

  1. Abi Lang says:

    I am so very sorry to read your story. So sad. Sending you love and understanding. If you haven’t already found ARC (http://www.arc-uk.org/) I really can’t recommend them highly enough to you. xxx

  2. Marcia A. says:

    I am so sorry for the loss of your beautiful babies…it is so heartbreaking. We, too, delivered our little girl on Jan 7, 2011 after being induced on the 6th because she no longer had a heartbeat as we found out on an ultrasound on the 4th. She was born still at 28 weeks along. Many prayers to you.

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