A father’s perspective

That deep primordial instinct to nest and procreate had kicked in – we had been happily married for a couple of years and my wife and I were now desperately keen to start our own family and see what kind of terrors we could create from our combined gene pool!

We probably hadn’t fully considered the impact of parenthood on our lovely holidays, fine dining, weekend lie-ins and big boozy nights out with friends, but we naively prepared ourselves with a detox diet, conception vitamin pills and ovulation pee sticks to optimise our fertility and then set about with the fun part of the process!

Except that after many months, it wasn’t quite so much fun anymore – it wasn’t the getting pregnant that we found difficult, but the keeping it that proved a challenge. There were multiple miscarriages at various early stages of the process, one of which we only discovered at the 12-week scan. They were twin girls who for whatever reason hadn’t managed to survive.

Nobody really talks about miscarriages and I think that’s a shame – one in four pregnancies ends in miscarriage and yet we had never heard of or spoken to anyone having gone through one and were blissfully unaware of the significant early stage risks.

Being forewarned of just how common miscarriages are, I think we would have been far more psychologically prepared, despite the natural sense of distress and mourning. As it was, it came as such a shock that we found it very difficult to talk about even with close family and friends, and led to us both being in a pretty dark place.

After four miscarriages, we were referred to a specialist who advised my wife to start taking aspirin, Clexane injections and Progesterone pessaries, to help a viable foetus stick to the womb.

Giving up hope of having a child

We had a further miscarriage and at this point we gave up. We unwillingly accepted that that we couldn’t naturally conceive children and decided to have a break and try to enjoy ourselves before contemplating adoption or IVF.

In these dark days, we turned to ‘old grandfather booze’ for comfort and on one of our more bacchanalian nights out at a big fancy dress thirtieth birthday party, we got ourselves thoroughly inebriated and ended up chain smoking whilst we held ourselves upright against the ropes of the marquee!

The following morning I woke with a banging headache and a foul taste in my dry mouth and the stench of cigarettes wafting out of every pore. What I distinctly remember is my Wife telling me that she felt a bit funny, like she might be pregnant and she insisted we go and get a test just in case.

Happy news!

We were indeed pregnant and whilst overjoyed, we were also tempered by the expectation that this pregnancy too, might not get past the first hurdle. We immediately amended our debauched ways and kept to the programme of painful daily injections in her tummy and pessaries in the bottom!

The nervous wait for that first scan, the clammy hands in anticipation of bad news as I sat by my wife’s jelly-smeared belly… and then, the shock as we were told that one of the tests suggested that there was a significantly higher than normal chance of Downs Syndrome.

New worries and questions begin to run through your mind – Did we do something wrong? Is it fair to keep a child with Downs? What would the impact be on our lives?

We were offered the choice of a procedure to give a definitive answer involving the rather grim prospect of a big needle stuck through my wife’s belly into her amniotic fluid, but it came with a 1% risk of miscarriage, or paying for an expensive new 100% safe procedure at a private clinic on Harley Street run by the same people at the hospital.

Ninety nine percent safe sounds like pretty good odds, until you realise that’s one baby in a hundred and that this is your precious baby. We opted for the private procedure and were hugely relieved to get the negative result back – Bam Bam was healthy and had got through the riskiest part of the pregnancy with flying colours.  That amazing moment when they tell you everything is healthy and normal. I was absolutely convinced that we’d had our scare and that it would be plain sailing from here on in

The 20-week scan was equally nervy with the worries starting all over again, but all went well and we discovered that ‘Bam-bam’ was a boy! We started to hope – imagining our lives with beautiful baby of thinking of possible names (my suggestion of Wolfgang for a boy was quickly vetoed by the wife!) and I was proud to hear he was on the large size and that we would need an extra growth scan at 32 weeks to check his progress.

We continued with our lives – exited by the impending arrival, busy at work and enjoying some lovely ‘Babymoon’ holidays in Mexico and Australia to ease ourselves into parenthood. It was a beautiful, relaxing and very happy time for us as we prepared ourselves for this next stage in our lives.

A not so ordinary growth scan

At the 32 week growth scan everything was going well until the chap doing the ultrasound noticed something about one of the measurements he was taking and said that we would need to go in to the specialist hospital unit for a precautionary scan – it might be nothing and he didn’t want to cause us any alarm by elaborating or speculating as it was beyond his level of specialism.

We were clearly concerned by this new and wholly unexpected unknown – but weren’t overly alarmed and assumed this was the NHS just being over-precautious. After all, the other scans had been fine and my wife was radiant – a glowing picture of health.

When we were told that there was a serious problem with Bam Bam’s health at the hospital, it hit us like a freight train. We were in shock and struggling to understand the magnitude of what we were being told or digest the meaning of the medical terms being thrown in our direction by the consultants.

The growth scan had identified severe ventriculomegaly – a swelling of the ventricles in the brain with fluid, which was often a sign of severe brain damage. This, however, was only part of the problem as the ventriculomegaly is only a side effect of an infection, which tests later confirmed was toxoplasmosis. Not a common infection in the UK, it is not even screened for during pregnancy, but catastrophic to an unborn child whose mother has not previously contracted it and developed immunity.

The rarity of our situation led to a merry-go-round of medical professionals coming to see us at the hospital like some paraded exhibit at the zoo – presented as an unusual and interesting case study and learning opportunity.

Life becomes an insulated blur

Over the following weeks, our lives became a blur of hospital visits, tests, helplessly waiting around, difficult conversations with specialist doctors and emotional conversations with each other and our parents. We closed the world out, became insular and, apart from our parents, didn’t share our news with anyone. In our state of shock and to simply survive what I can only describe as the single most difficult and painful period in my life, we put on a front, went to work and pretended that everything was fine.

The toxoplasmosis virus destroys the brain and the eyes and is often fatal. We were having to face up to some devastating facts about our son’s chances of survival and a vast spectrum of unknowns about his potential quality of life.

Despite a positive response to the cocktail of drugs that my wife was put on to stop the toxoplasmosis from causing any further damage with the ventricles shrinking back to a more normal size, the prognosis was not good.

It was estimated that she had contracted the toxoplasmosis in her second trimester, possibly whilst we were in Mexico, where it is more prevalent. Babies that contract toxoplasmosis in the first trimester typically don’t survive, whilst in the second and third trimesters are often terminated if the virus is identified before birth due to the severity of damage and disability the virus causes.

Complete uncertainty

Very few of the professionals wanted to give a definitive medical opinion on outcomes and it was this uncertainty that we found most difficult – there were such wide spectrums involved that clarity was impossible and medical fence-sitting was the preferred conjecture.

Despite this late stage of pregnancy, when a normal abortion would be illegal, we were being offered and strongly recommended termination as a good solution for both us and the baby. According to the highly-regarded director of foetal medicine at the first hospital, who I am grateful to for being one of the few professionals to offer a definitive medical opinion – Bam Bam had no chance of a normal life. He would be severely disabled with a low quality of life and no prospect of independence or self-sufficiency and that looking after him would have a detrimental impact on our lives. He offered his personal opinion that we would be foolish not to terminate and we would be risking our happiness and marriage by proceeding.

It is difficult to convey a real sense of the difficult and emotional journey we went on in reaching a decision over those weeks. Alongside exhaustive online research, we sought out the professional advice of every specialist we could find including the directors of foetal medicine at two London hospitals, a paediatric neurologist and a leading global expert in toxoplasmosis based in Chicago whose kindness and generosity in giving us so much of her time will never be forgotten.

The professional opinions offered by the other director of foetal medicine and the paediatric neurologist were far more balanced and gave hope for a more positive outcome and the opinion of the global expert, who was the only professional who had extensive neonatal experience of children with toxoplasmosis was much more positive about Bam Bam’s chances of enjoying a good quality of life even if there were disabilities and challenges to overcome. Much hope was provided by the extraordinary plasticity of babies’ brains that can in some instances overcome trauma, that would be otherwise lethal, to find other ways of achieving high levels of functionality.

Even once we had collated all the conflicting opinions, perspectives, facts and speculations, our decision was no closer nor easier and we struggled to conclude what outcome was going to be better for our son. Was it cruel and selfish to continue with the pregnancy, given the possible low quality of life? Did we have the right to intervene and decide whether someone (let alone our own beloved son) should live or die? Given our previous problems, would we have another chance to have a child?

A decision without certainty

I would love to tell you that we stood by strong convictions throughout, never wavering over what was the right decision to make, but amid the tears and deep, dark thoughts, and despite the strong support of our parents, who offered love, guidance and perspective, but never judgement (despite their personal beliefs), we flip-flopped all over the place.

We came to a point where we had both agreed to terminate – the decision was made. However painful, it was the best decision for our son and for us. We booked a time in with the hospital for the next day and could think of nothing else. We even discussed funeral arrangements.

With such a late termination, the process is a pretty grim one – they stop the baby’s heart with an injection and then induce labour, so my wife would have go through the birth knowing that our son was already dead.

When we woke up the next morning, we had both had a change of heart – we just couldn’t go through with it. Maybe it was weakness or maybe the thought of never being able to forgive ourselves for knowingly ending our baby’s life – either way he was a fighter and he deserved the chance to carry on fighting.

The birth

At 38 weeks my wife’s water broke like a tidal surge all over our bedsheets at 11pm and we rushed off to hospital, only to find that she was nowhere near starting labour. After a few hours of waiting around uncomfortably at the hospital, we headed home to get some sleep in our own bed and agreed to come back the following day. For whatever reason, the contractions never started and despite attempts at induction, there was no onset of labour 48 hours after the waters broke.

By this time, my wife had gone through the excruciating experience of three failed attempts at an epidural and shockingly being asked, when the baby’s heart rate had dropped to dangerous levels, whether we wanted to proceed with a c-section or give it ‘a few more hours’, which led to the risible situation of the doctors and nurses arguing whether it was an emergency or elective c-section that she was being rushed into at 1am in the morning!

The c-section was one of the more horrific experiences of my life – I’m not good with blood and gore and this had the lot! The procedure took longer and was more complicated than they had hoped – struggling to get the baby out and having to make a very wide cut to do so. I turned grey, nearly fainted and had to be helped out of the room – not quite the supportive husband I had planned to be!

The arrival of our ill son

When our son was finally pulled free he was blue and floppy and needed to be resuscitated and taken straight into intensive care. Looking so small and fragile, he spent the next three days in the Neonatal Intensive Care unit, where we were able to visit and feed him under the supervision of the nurses.

We were then transferred to the Paediatric Infectious Diseases unit at another hospital in London, where we spent the next two sleepless weeks of our lives hoping he wouldn’t die in the night as his oxygen levels kept dropping and setting off alarms.

We were finally released home to start our not so normal lives as a family and although our son was doing well, we already knew that he had visible signs of brain damage as well as one small underdeveloped eye and the other damaged by scaring across his macular.

Multiple medicines had to be cut, crushed and prepared into a solution to be administered orally at various times every day – this was the cocktail of drugs that would continue to fight off the toxoplasmosis for the first 12 months of his life. We also juggled demanding full time careers and multiple appointments at different hospitals every week with the support of our parents, until I took additional paternity leave for 6 months to look after my son full time.

We made the right decision for us

It is one of the most rewarding decisions of my life and I’m pleased to say, that despite his challenges, our son has flourished into a wonderful, intelligent and loving young boy confounding all professional expectations.

It horrifies me now to think that we came so close to not giving him a chance and whilst I would never judge anyone put in a similar position or rush to conclude that our decision is right in every instance, I am so grateful we have had the opportunity to share our lives with him.