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Penny and Daniel

What happened to Daniel?

We are constantly asked questions such as, “How did Daniel get cerebral palsy?” or questions relating to how well Penny handles herself under pressure for which most people would crumble, with Penny’s permission I have compiled a brief overview of why Penny is such a hero (in my eyes)…

Penny has almost died twice…  The first time to cancer and the next was Daniel’s birth…

Cancer

In 1993 our first attempt at a family resulted in Penny contracting a rare condition called Trophoblastic Disease which required her to have several operations to get rid of the cancer.  Unfortunately each operation was unsuccessful with the cancer growing back each time.

After weeks of unsuccessful operations she was required to undergo chemotherapy as a last ditch effort to get rid of the cancer.  This lasted several months and while improvements were being made it got to the point where she became resistant to the chemo and a new drug cocktail was required.  This ‘cocktail’ was so rare that it meant she was only the 18th woman in Australia to receive this treatment.  It was also an indication that things were not going as well as expected.  At this point, if this treatment did not work she was facing a life without children as a hysterectomy was going to be the only option in order to save her life.

Without going into a lot of yucky detail this was a very difficult time of our lives as a newly married couple and really tested us.  After weeks on this new cocktail the news from the treating Professor was that it had been successful and that she was now cured  – that was a meeting that we will never forget.

The worst outcome of this, for Penny, was that she was told she could not fall pregnant for three years while the chemotherapy exited her system.

Daniel

Firstly, there was a 50/50 chance that the simple act of Penny falling pregnant could result in the cancer coming back.  Luckily it didn’t.  However, as you could imagine, there was a lot of consultation happening as well as some pretty intense decision making on our part with the help and influence of many professional physicians.

The story around Daniel’s birth was traumatic.

It was Monday evening and Penny, in her 37th week, had gone to bed as she was getting increasingly uncomfortable and not sleeping very well.  I had gone to bed and a short time later Penny advised she was going to sleep out on the lounge as this was more comfortable (it sagged in the right places!!).   At around 12:15am on the Tuesday morning I noticed the bathroom light went on and Penny calmly calling me to advise that her waters had broken.  What immediately raised her concern was that there was blood in the water.

We rang the hospital and asked if this was OK to which the nurse replied, “Don’t break any speed records but come straight down”.  That was enough for me!  I bundled Penny into the car and took off from Hornsby Heights to St Leonards at around 1:15am.

We had only got to the end of their road when Penny had her first contraction.  It was long and really caused her a lot of discomfort.  Instead of waiting at the red light I, carefully, drove through.  The 2nd contraction happened half way down the Pacific Highway at Lindfield.  At this point I was ‘cautiously exceeding the speed limit’ although I could see in her face that she was going from discomfort to pain quite quickly.

As we rounded the top of Gore Hill, only two blocks from the Hospital, Penny had her 3rd contraction at which time she gave a brief grimace and then passed out.  Something was terribly wrong.  Penny was now unconscious in the front seat with only her seatbelt stopping her from falling completely forward.  As we rounded a corner her body rolled in the seat and she hit her head on the side window so, with one hand on the steering wheel and the other around Penny I put my arm around her and cradled her into my shoulder to stop her from falling sideways and injuring herself further.

On the approach to the hospital I questioned whether we should go to the Emergency or to the Maternity section.  My wife was out cold and oddly enough she was snoring loudly as her limp body rocked in the seat.  It was then I remembered the pre-natal classes in which the nurse had said, “No matter what happens, always make sure you come to Maternity”.

We pulled up in front of the maternity building as Penny was just starting to regain consciousness.  They bundled her into a wheel chair and noticed both the colour of her face and the excessive amount of blood coming from her.  The first nurse remarked, “Shall we take her into the observation suite?” to which the other replied, “I don’t think we have time”.

This comment unnerved me.

They took her straight into the birthing suite for a quick examination, however when this resulted in blood shooting across the room all hell broke loose, it then looked like a scene from a medical drama.  People were shouting, “She’s had an abruption”, “Get her doctor here now”, “Prep the theatre team”.  One nurse leaned across to Penny and, while she was grey and almost out cold again she asked her to sign a consent form while the others ran with her down the corridor bashing through the doors and into the theatre.

One nurse turned to the other and said, “you stay with Mr Clarke”.

Penny was barely conscious and was loosing blood fast.

It was an old style hospital that wasn’t design with a lot of thought and while I was told to wait in the ‘Waiting Room’ it was, unfortunately, just opposite the operating theatre doors.

Just two weeks prior to this incident, Penny and I had read an article about a lady in Tweed Heads who had a placental abruption and, while in transit to the Gold Coast Hospital, both mother and baby died through loss of blood.  I didn’t realise that at the time that this is what Penny was experiencing and typically from the time of the abruption both mother and child are dead in around 20-30 minutes.

We were now at 30 minutes.

I slowly walked out and stood at the opening of the Waiting room.  The nurses had unknowingly left the doors open and I saw my wife lying on the operating theatre table with blood running down the stem of the table and all over the floors.  It was pooling on the floor so badly that people were treading in it and footprints were everywhere.

It was a memory that I would rather not have had.

Minutes later the nurses burst from the room with my son in a humidicrib and said, “If you want to see your son then you better run with us”, I immediately started jogging beside them as they made their way along the corridor toward the Neonatal Intensive Care Unit (NICU) and then had to stand outside while they hooked him up to all of the machines.

It was now 2:15am and I was alone in the hospital corridor.

As I walked back down the hallway towards the waiting room, Penny’s doctor appeared and just looked at me, he said “I am sorry to tell you, but your baby has brain damage”.  He went on to explain that Penny was very ill and had lost more than 50% of her blood.

I was stunned…I couldn’t move or think properly.

What had just happened to our lives?  We were going to be a mum and dad with a new baby and now?

Needless to say, this was the moment when our lives took a very abrupt right hand turn away from where we thought our lives were going.

Penny was now very ill.  She was unconscious for 3 days and was confined to the Birthing Suite – they couldn’t move her for fear of killing her.  She developed DIC, which is a life threatening anti-clotting condition and had complete renal failure.  One of the counsellors took me to the grieving chapel and told me I should ‘start making arrangements for both of them as the outlook did not look good for either’.

On the fourth day she was starting to show improvement so the doctors and nurses tried to get her in to see Daniel in a wheelchair but she passed out trying to get her upright.  A day later we tried to get her whole bed into the NICU so she could see our son but she passed out again and it was considered to be too dangerous to try again.

Penny’s condition improved over the coming week and after another week she was allowed to leave the birthing suite and was taken to the Nursing quarters.  Daniel stayed in the NICU for 3 weeks before being allowed to come home.

It was understood that Daniel had a reduced oxygen supply for up to 18 minutes which was the main factor causing cerebral palsy.

Several things happened that night that saved Penny’s life and our obstetrician said that, “It was a miracle that this all came together”;

  • Pre-natal training told us to always go to maternity and not emergency
  • She did not go into an observation room first.
  • A visiting registrar from the main hospital happen to be present (Apart from our own doctor, the registrar was the only person authorised to commence the procedure)
  • An anaesthetist from the main hospital was on a break and was visiting the maternity section by chance
  • The theatre team had just completed another Caesarean, had re-prepared the theatre ready for the next patient and were almost ready to leave.

Over the next several months Daniel was analysed and monitored by many Neurosurgeons, paediatricians and specialists of every kind.  He was originally diagnosed with Epilepsy and was given anti-convulsants for 3+ months even though he had never had a fit.

Finally after many months of testing and observation Daniel was diagnosed with Ataxic Cerebral Palsy and treatment with the Spastic Centre’s physiotherapists, occupational therapists and speech pathologists commenced.  Later this diagnosis was changed to Athetoid Cerebral Palsy.

Penny recovered to perfect health and subsequent discussions with the doctors revealed that perhaps Penny’s fitness, while teaching Ice Skating, masked high blood pressure.

After coming through this ordeal Penny has always had a deep seated belief that she was ‘meant’ to survive for some reason, some purpose.  She now beleives that both Daniel and William are meant to be here as they are the ones that have the special purpose.

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