I experienced a miscarriage in September 2005 when an early scan failed to show a heartbeat.  Therefore, when I came back from holiday in July 2006 to discover I was pregnant my partner and I were ecstatic.  However, within a few days I started to experience similar signs and symptoms as before, namely spotting and this time quite severe cramps.

My GP referred me for an early scan privately which thankfully showed that this time there was, indeed, a tiny heart, although I was only 7 weeks pregnant.  The gynaecologist explained that my body may see the embryo as a foreign body which it wished to expel, hence the contractions of the muscles of my uterus, and that my body may not yet be producing enough progesterone to relax those muscles.  She, therefore, prescribed progesterone suppositories, which worked almost immediately.  She also advised me to go for a triple test at 12 weeks for Down Syndrome.

At the triple test, I was concerned whether there was still a heart beat, but sure enough it was still going strong.  The consultant confirmed that the nuchal fold was well within the normal limits and he anticipated there would not be any problem with the blood test which would check the levels of 2 markers in my blood.  However, later that day he explained over the phone that one of the markers had come back significantly low - so low, in fact, that the probability of the baby having trisomy 21 (Down Syndrome) had gone from 1 in 1,000 to 1 in 51, which would be considered a very high risk.

Although this news was absolutely devastating, after much discussion we decided that the baby's health was the main priority and for that reason we would wait for the 20 week anomaly scan before we made any decision about amniocentesis (due to the 1 or 2% chance of miscarriage).

At the 20 week scan, once again my primary concern was the presence of a heart beat.  When it was shown to be there, yet again, I felt able to relax.  The lady giving me the scan talked me through all of the baby's anatomy but told me that she could not get a proper view of its heart (we had decided not to find out the sex) and as far as she could see the left side of the heart seemed smaller than the right.

She referred me on for a scan with a perinatal cardiologist 2 days later which confirmed that, indeed, there was a small blockage in the aorta, the artery leaving the heart, known as coarctation of the aorta.  We were told that this blockage was causing the asymmetry of the heart and that although the baby would not be affected for the rest of the pregnancy or for the birth, once the duct closed off after birth as naturally happens in all babies, the baby may collapse and require resuscitation.  Therefore an operation to clear this blockage was advised soon after birth.

This news sent us into a whirlwind of worry about our baby’s health as well as resurfacing the high risk of Down Syndrome.  Most of the professionals we saw also confirmed that congenital heart disease does often occur in babies with Down’s.  We were sent for regular growth and cardiac scans and received excellent care and support.  We had the opportunity to visit the hospital where our baby would be admitted and were assigned a cardiac nurse who was always at the end of a phone to answer the most technical or simple of questions.  

During the scans some other 'soft' signs of Down Syndrome were identified, namely an ecogenic focus (or bright spot), a short femur (thigh bone) and the baby being particularly small.  These furthered our concerns over the baby having Down’s, but after much deliberation we decided that as we would not act on the results and we would not pursue an amniocentesis.

I scoured the net and pregnancy magazines for similar stories but failed to find any.  They all seemed to be about people who had thought there may be a problem, but luckily in their case there wasn't.  There were stories of people who had undergone amniocentesis without the intention of acting on the results, but for us we felt that that as our baby had already been the 1 in 145 to have congenital heart disease we did not want to take even the 1 or 2% chance of miscarriage through amniocentesis.

A final scan at 36 weeks confirmed that the baby would most definitely need an operation soon after birth.  It was also discovered that the baby was lying in a breech position, which had only a 3-4% chance of occurring.

I was booked in for a caesarean at 39 weeks and on Friday 13th April 2007 our beautiful baby boy Domenico was delivered weighing 5 lb 12 oz.  Although we requested a blood test from the umbilical cord at birth, the paediatricians immediately reassured us that they were 200% sure he did not have Down’s.  After a brief kiss on the arm, our baby was whisked upstairs to be put on Prostaglandin to keep open the duct and for observations on his condition to commence.  A few hours later his daddy accompanied him along with 3 members of staff in an ambulance to the hospital where the surgery would occur.

I, meanwhile, stayed in the maternity ward to recuperate, so that I could make sure I could be there alongside our baby when he needed me, all the time eagerly awaiting to hear when the operation would occur.  I had plenty of family and friends to visit, but felt that somehow I was cheating them as I had no baby to show them.  It was like being a child on Christmas morning with no toys.

We were soon informed that the operation would take place on the Sunday morning.  I was driven over to the hospital where my baby was and held him for the first time.  Only then did I understand what my partner had been explaining to me ... the baby that we had known so intimately for 9 months, our baby, was now his very own little person in his own right, whom we had to get to know all over again.

However, time did not allow this to happen on this occasion. We had a lovely cuddle each, followed by his Christening.  He was then brought down to surgery.  Although well wishing nurses kept on offering 'one last kiss', we were quite relieved when the surgeon suggested that we go off and he deal with the task in hand.  We were told that time was of the essence as it may take over an hour just to locate veins to insert the required lines.

We went for a very long lunch to distract ourselves.  I was very much over whelmed by being back in the very fast moving and materialistic, 'real' world after having been very much absorbed in the baby friendly, caring and considerate environment of the maternity hospital and the cardiac unit.

Over 2 hours later it was time to return to the PICU (Paediatric Intensive Care Unit) where our baby was resting, the surgery having been a success.  He was then monitored and cared for 1-to-1, 24 hours a day until he was ready to be moved to another ward.  The staff were truly fantastic, providing our baby and ourselves with all the support we needed, being a friendly chat or explaining for the umpteenth time how to feed him through his naso-gastric tube.

Click here for pictures from intensive care following surgery

Certain touches made all the difference such as the staff being rotated each day and the doctors always consulting the parents (as well the nursing staff) on his progress so that as new parents we always felt that no one was closer to or knew our baby more that ourselves.

Seven days after the operation at 9 days old, we were able to take Domenico home which was the best outcome we could have ever wished for. 

Although we are aware that it may not be the best scenario for everyone, from a very personal perspective, we feel very lucky that we knew about Domenico's heart condition from a relatively early stage of the pregnancy. Yes, there was considerable stress during the pregnancy, but we feel that having come to terms with it once Domenico was born we could channel all our energy into making appropriate decisions for him  and his recovery.  We feel that as the baby was taken away immediately after birth it was easier to hand him over for the operation rather than if we had had the chance to take him home and for him to become 'ours'. 

While we feel totally satisfied with the decisions we made in this pregnancy, this does not mean that we would make the same decisions for subsequent pregnancies, as each pregnancy is unique and must be viewed with consideration to its individual details.

Claire & Ciro, 2007