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Samuel Isaac Andrew (6 Jan 2014 - 9 Jan 2014)

Samuel Isaac

Samuel Isaac Andrew Robinson was born on 6th January 2014 and died on 9th January 2014 at 3 ½ days old. His parents, Jane and Andrew were told of Samuel’s diagnosis of Trisomy 13 when Jane was 21 weeks pregnant. They decided to carry on with the pregnancy.

Samuel Isaac Andrew Robinson was born on 6th January 2014 in Whitehaven, Cumbria at 35 ½ weeks gestation with Trisomy 13.  This article has been written by his parents as a tribute to Samuel, to raise awareness of Trisomy 13 and to share some of our experiences, especially with those who may find themselves in a similar position.  We faced having to make many difficult decisions during this time and we found that being informed was the best way to cope and decide on a way forward. 

 

As Samuel’s parents, our first and probably most difficult decision was back in the Autumn of 2013 when we had to decide whether or not to carry on with the pregnancy.  At the time of Samuel’s diagnosis we had not heard of Trimsomy 13 or Patau Syndrome.  Samuel is our third child.  After several unsuccessful attempts at IVF over several years we had been told by the medical profession that we would never have children, however by the spring of 2013 we had 2 girls aged 3 ½ and 12 months, both conceived naturally.  When Samuel was conceived we couldn’t believe it but our problems began to appear at the 13 week dating scan in the summer of 2013 at our local hospital when there were some concerns about a cystic hygroma so we were referred to another hospital for further investigations.  The next 8 weeks were spent waiting for and then having further scans to try and find out what was wrong.  A congenital heart problem was diagnosed at 17 weeks and we were told that our baby would need heart surgery at birth and then several more times in early childhood.  We were offered a termination at this point but decided to carry on with the pregnancy.  At 20 weeks problems with the development of Samuel’s brain were seen on the scan.  We had resisted having an amniocentesis up until this point due to the risk of miscarriage as we had already decided that if Downs Syndrome was diagnosed we wouldn’t terminate the pregnancy so why take the risk of miscarriage?  We knew nothing of Trisomy 13 at this point.  At the end of a very long hospital appointment with more bad news we agreed to have an amniocentesis done so that everyone knew what we were dealing with.  When the results came back, after an agonising wait because of the weekend and then a days delay in getting the results done, we were told that Samuel had Trisomy 13 or Patau Syndrome, described to us as a fatal chromosome problem. 

 

We then had the heartbreaking decision of whether to terminate the pregnancy or continue it with the option of palliative care once Samuel was born. We were told that because Samuel had Trisomy 13 heart surgery would no longer be an option.  We felt at this point that the medical profession were painting the bleakest of pictures for us and it was encouraging to read on the Soft UK website the stories of babies with Trisomy 13 that are born alive and who do live longer than the medics predict.  We were realistic though and we knew that with the extremely serious type of congenital heart defect that Samuel had it was unlikely that he would live for very long.  We were also told that there was a high chance that he would not be born alive.  We got the impression from the medical professionals we were dealing with that they thought that we would automatically decide to have a termination, as if that was the ‘normal’ thing to do in these circumstances, the thing that everyone does. 

 

We spent a weekend praying about what to do and despite our Christian beliefs in the sanctity of life it was not a clear cut decision.  After much prayerful consideration we felt that as God had created our baby, so only God had the right to decide when this precious life should end. We decided to carry on with the pregnancy.  With all the difficulties we had been through conceiving children we just could not bring ourselves to end the life of this baby and we wanted to give him every chance possible.  As you will read in a little bit, we can now look back and say that this was the right decision for us to make.  However, I have learnt over the years with all that we have been through with IVF and now our experience with Samuel that if you are faced with a difficult ethical decision to make only you can make the decision and you need to have peace that you can live with the consequences of the decision you make.  Do not worry about what other people will think, although this is a lot easier to say than do, do not feel pressurised to do what is the ‘norm’ and gather as much information as possible to make an informed decision. The statistics say that the majority of pregnancies diagnosed prenatally with Trisomy 13 in the UK are terminated.  We would like to share our story to show that there is another way.

 

Once we had made the decision to carry on with the pregnancy we began a discussion with the staff at our local hospital about what should happen before, during and after Samuel’s birth.  In consultation with the paediatrician we wrote a detailed birth plan outlining what as parents we would like to see happen should various different circumstances present themselves at the time of Samuel’ birth.  As the time for Samuel to be born got closer we became more and more concerned about the very difficult decisions that as parents we would have to make such as whether or not to carry on with resuscitation when he was born.  In the end, during his short life Samuel made all the decision for us.

 

Samuel wasn’t expected until the beginning of February 2014 and we were concerned that he may not be born alive.  At the end of December we were trying to decide when would be the best date for an elective caesarean.  Jane had had 2 emergency caesareans previously so the decision to have a planned caesarean with this pregnancy was not because of the Trisomy 13.  In the end Samuel decided to surprise us by announcing his wishes to be born in the early hours of the 6th January when Jane fell ill with HELLP Syndrome, a type of pre-eclampsia.  We were told by our health providers when we were trying to decide whether to carry on with the pregnancy the summer before that there would be no affect to maternal health with carrying on with the pregnancy.  From what we have now read online we are convinced that carrying a baby with Trisomy 13 can have a detrimental affect on maternal health.  We only say this to make other mothers aware rather than to put people off carrying on with a pregnancy.  Our advice to anyone carrying a baby with Trisomy 13 is to research online and to inform your midwife to look out for the signs of pre-eclampsia and HELLP.

 

 

As Samuel entered the world the medical team gave him a couple of breaths of air but when they tried to put a suction tube in his mouth he voiced his concerns. This would be something he would do throughout his time in hospital. Whenever a doctor or nurse wanted to examine him or do anything to him he would object and throw his little arms around and quietly cry.  Just like every other little baby boy he even managed to give everyone a demonstration of how well his bladder was working.  Only when mummy or daddy cuddled him and talked to him would he settle down again and enjoy his sleep. He especially enjoyed mummy gently stroking the side of his mouth and it turned up as if it was forming a little smile but did not enjoy his daddy tickling his feet quite so much. When discussing whether he should go to Newcastle to have his tummy looked at by the doctors over there, Samuel made the decision by lacking stomach movements so there was no need to go.

 

As the song says “he filled up our senses”- he had a lovely smell to him and his sister Hannah commented how soft his skin was to touch.  Samuel had none of the visible physical deformities that are frequently associated with babies with Trisomy 13 and despite being born a few weeks early, weighed in at 6 lbs 3 oz. He could hear everyone’s voices as they spoke to him, recognising certain nurses as they approached and gently dozing off as his parents read to him or as he listened to his sisters’ Tumble Tots CD or even when his dad sang lullabies, especially Twinkle Twinkle Little Star.  We had a small Service of Dedication for Samuel in his room and he lay quietly in his cot holding his daddy’s finger.  When there was nobody’s hand to hold he gently held his blue bunny that daddy had bought for him.  Despite all his problems we do not believe he was in any pain and in the end, he just forgot how to breathe, which was part of the Trisomy 13.

 

Our story of course doesn’t end there nor did all the decisions that we still needed to make.  At the time of writing this article it is 9 weeks since Samuel died.  At the end of the day on which Samuel died, and once the coroner had agreed, we made the decision to take Samuel home from hospital with us. This helped both us and his sisters come to terms with what was happening and although this raised a few eyebrows from those who thought we should have left him in the hospital mortuary or the funeral director’s Chapel of Rest, it was the right thing for us to do.  We wrapped him in a blanket and placed him in our bedroom in his moses basket.  One week later we had a Service of Thanksgiving for his life.  Samuel left our house in a tiny white coffin and he came with us and his sisters in our car as we drove as a family to the church for the Service of Thanksgiving.  Samuel’s body is now buried in our local cemetery and is somewhere that his sisters can go and visit in the future.  This is particularly important to us as parents as his youngest sister is too young at the moment to understand what has been happening.  Samuel will always be an important part of our family.  He has taught us how precious life is.  None of us know how long our lives will be and Samuel only had 3 ½ days with us but they were very precious days.

 

 

 

   

March 2014

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