Song playing is:~  The Prayer

'OUR STORY OF JACK'

Here is 'Our Story' of Our Most Precious Little Angel 'Jack'!

It was Friday 7th July 2000 and we were waiting in the hospital for our 20 week scan...  Both our other two children were with us, Sophie 9 and Ben just 2 yrs.  When they called us in, Sophie sat watching the screen and taking in everything the Sonographer was saying...  She showed us our little baby's hand that seemed to be waving, and we saw all the limbs, legs, arms etc...  It was wonderful - until...  the Sonographer said she would just like to get a 'second opinion' from another doctor...  Alarm bells started to ring, we had never experienced this before with our other 2 children, what on earth did she want a second opinion on?

When she came back in the room, she explained that the Kidneys were showing to be very bright, although she couldn't tell us what this meant...  An appointment was made for the following Wednesday to see the Specialist, to see what he thought.  

We left to go home ~ distraught, wondering what on earth the problem was with our little baby... Sophie asked if everything was ok?, what could we say, we just didn't know...

I don't know how we got through the weekend...  Andrew took some time off work, he couldn't concentrate...  We just wanted this next appointment so we knew what the problem was...  Wednesday came and we went to see the specialist...  Kidney failure, he said! From what he could tell from the scan, our little baby's kidneys were full of cysts and growing rapidly...  But they can do a transplant we said, eagerly hoping for some positive view from someone but his reply was, "It probably wouldn't work"...  He explained that if our baby survived full-term in my womb then he would only live a short while after birth...

So basically, we were now being told that our baby was very sick, and that he may not survive full-term either...  Andrew and I had been hoping that the other Doctor had got things wrong and that this scan was going to be ok...  How wrong could we be... 

We asked to be  referred to a top London hospital where they were more specialized in this certain field...  Our appointment was made for Monday 17th July 2000 - another 5 days away.  Only a few days ago we were enjoying all aspects of being pregnant again - and now our lives felt as though we had been plunged into a living nightmare.. What were they going to say in London?

Monday came ~ we travelled to London for our appt.  We were so scared of the outcome,  looking back now on our notes we had reason to be...

We had a scan and spoke to a 'Paediatric Urologist' from Great Ormond Street Hospital ~  'The Hospital for Sick Children'...  We were asked whether we would agree to any intervention at the moment?  Did they really think we would put our baby at risk anymore!!  As far as we knew, our unborn child had enough problems to cope with, let alone us intervening, so no, we refused...  They basically said the same as 'our' hospital, could be signs of renal dysplasia...  come back for another scan in '4' weeks.

We left, again, absolutely distraught...  Thankfully Andrew's cousin Perry had accompanied us on this first appt. and believe me we needed him...

Over the next few days, we called some family members to explain that there was a 'problem'...  I think everyone tried to keep saying, 'It'll be ok, things will work out, miracles do happen' ~ but we knew from our hearts that things were out of our hands and that our little unborn baby was going to need a lot of help...

From this day onwards, every single day, I scoured the internet with lots of help from my father for as much information as I could possibly find on this syndrome.  Without allowing the hospital to do some invasive tests on our baby in my womb, we were told we couldn't have a definite diagnosis.  We were just told it was: ' Polycystic Kidneys' - ARPKD -  (Autosomal Recessive Polycystic Kidney Disease).

I wrote hundreds of e-mails to many, many different organizations and so did my father.  They all came back with the same reply...  There is No Cure... I could not sit back and know that our baby would not 'make it' - I tried everything, even arranging to fly out to the U.S.A  where I felt that they may have more experience in this field than here in England, anything to give our precious baby a 'chance' - but after speaking to a professor from the States, he said they can offer no more out there than what they could here and that the hospitals we were under here are the best in the country...

How we waited for 4 weeks until the next appointment I'll never know...  I remember calling the hospital and asking for an earlier appt.  Didn't they realise that making us wait 4 weeks was unbearable... I kept thinking that our baby may 'die' in my womb (as they kept telling us was a possibility) and I wouldn't know...  They couldn't give us an earlier appt.  We had to wait the '4' weeks so that they could note the changes in growth etc on the scan...

14 August came ~ our second appt. in London...  Thought we may have a better prognosis today... Andrew and I had been feeling slightly more positive, thinking that everyone had just made an awful mistake etc...  Infact, each appt. that we were attending, the outcome was to get worse...

Todays  prognosis (as written by the specialist)-  "Kidneys still bright and relatively larger today with the likelihood of serious renal pathology.  The prognosis may be poor. The pregnancy may end in death and the chances of any significant degree of renal function are small".

When we left this appt. today and read what they had wrote above, we felt that our life was falling apart at the seams...  How could our baby be this sick!!  We didn't understand any of this...  It was just like a bad dream...

11th September came, our third appt. in London...  Prognosis getting worse. We were now told today that there was a risk of Pulmonary Hypoplasia...  We spoke to some Neonatologists regarding care for our baby at birth ~ and asked the hospital to make us an appt. with the team of 'Nephrologists' as soon as possible...  They want us to go back now for 2 weekly appts. instead of the usual 4wks...

25th September came, our fourth appt. in London...  Prognosis gets worse... They told us today that they feel the most likely outcome is 'neonatal death secondary to pulmonary hypoplasia'... They kept saying that our baby hasn't really got a chance ~ and that they stressed the need for a postmortem, renal biopsy and skin sampling to obtain renal histology and DNA for banking...   Here we are, 31 weeks pregnant and they're talking of doing a postmortem on our baby who was kicking and moving around inside of me...

We started to feel on this appt. that we were being used as guinea pigs... What Jack had was pretty unheard of , so they obviously wanted to find out as much as they could, yet we feel that they were not taking our feelings into consideration... They also told us that we should have our baby delivered up there in London and not here, but we explained that if our baby didn't survive, how would we be able to bring him home, being such a long way from home?

Well, this is where it started getting complicated... We were told that different hospitals have different policies...  If we were to deliver in London and our baby did not survive, then we would NOT BE ABLE to bring him home ourselves.  He would have to stay up there whilst London arranged paperwork etc,  he would then be bought home by the undertakers up there...   This was completely against our wishes...  We had always said that if our baby did not survive at birth, then we would leave hospital within a couple of hours and take our baby home with us, spending as much time as possible with our  angel and this was definitely not going to happen if we delivered in London...

We kept asking the specialists if they thought there was any hope for our baby ~ the reply was always the same ~ 'no', so Andrew and I made a positive decision to deliver our baby at home in Colchester where we knew our midwives, they knew us, our family were all close by and we had the support of everyone around us...  We would have none of this in London...  We honestly felt that London were more interested in obtaining samples for histological diagnosis, and any other samples they could get from our baby...

We thanked  London for their experience, but explained that if there was little chance of survival for our baby then we wanted to be at home...  We needed to make sure everything we were doing was in the best interests for our baby ~ and everything that we wished, we had to be sure would be carried out...

We saw the Nephrologists at Great Ormond Street Hospital...  They tried to help us and explain to us what would happen if our baby was to be in the hospital after birth...  It sounded awful, what these poor little babies have to go through when they are so sick... did we really want our baby to go through years and years of hell, never leaving hospital for the first 18 months, hooked up to tubes, wires, shunts etc, when there was 'no cure'...  We would do anything for our baby, that is what parents do isn't it, but I think you have to be strong and look at it from the child's side...  If our baby did manage to breathe on his own - he would most likely not survive more than a few hours even with intervention ~ would this of been fair?  

Andrew and I went home, knowing that we had some serious decisions we had to make...  'What was in the best interest for our most precious baby'... 

We spoke to our midwives who always came to visit us the following day after our appointments in London...  We asked their advice on what they feel we should do...  The decision was up to us, do we intervene at delivery, how long do we try and resuscitate for if our baby didn't breathe and another 20 questions that we just didn't have answers to...

By this time, I had been in contact with many people on the internet mainly due to help from my father who lives out in California - (we are in England)...  We found out as much as we could about 'Polycystic Kidney Disease, Potters syndrome and all the related syndromes that go together down the line... We always came up with the same outcome though... 'THERE IS NO CURE'...

We couldn't understand why they couldn't transplant...We were told that to find kidneys this small was basically a trial in itself ~ (We offered ours, but this wouldn't of been able to happen for a while due to the size) ~  also, due to there being no 'amniotic fluid' at all in the womb, baby's lungs would not of had the chance to mature, so although what we first thought was the kidneys causing the problem, we now found out that as it's the kidneys that produce the amniotic fluid, the lungs would be very immature and this would be the main problem for our baby at birth...

It honestly felt as though our baby didn't stand a chance from conception ~ but was thriving in my womb, growing at the 'normal rate' and 'normal weight' etc...  How could this be happening...

We explained to our own hospital that we wanted to deliver here, not in London and this was fine, so we then started 2 weekly appointments here to keep an eye on our little baby...

We knew we were expecting another little boy, we had asked our hospital to take into consideration our situation and asked them for the sex of our baby at one of the scans, and thankfully they told us...

From now, we just had to hope and pray that our little baby boy would survive the next few weeks in the womb and then the 'birth'...

We were now 33 wks pregnant when we started to really think seriously about what we were to do for our baby at birth...  We had always thought what we were going to do, but now we were told that the decisions should be made and kept...  How can you make decisions like this for your baby?

We finally decided that as little intervention as possible would be in Jack's best interests if he was not to breathe on his own at birth...  We could never have him suffer...   If 'Jack' could breathe on his own then we wanted him transferred to Great Ormond Street within 12 hours so that he could be monitored and dialysis started...

If Jack tried to breathe then we wanted to attempt resuscitation...  If he was going to try then so were we... 

If Jack showed no signs of attempting to breathe then we would let God decide for us...

Well, there were our decisions, we just had to make sure we stood by them at delivery, only doing what was the best for 'Jack' ~ our feelings had to come second, Jack came first...

The rest of the pregnancy went well...  Jack wriggled and moved every day, so many times...  It was hard to even begin to imagine that he was so poorly...  Every move I felt was treasured in my heart...  Our Midwives were fantastic, there for us day or night ~ we just had to wait now until Jack decided it was time to come...

Throughout these last weeks we talked everything through as much as was possible regarding each possible outcome at the birth...  We knew in our hearts that Jack was not going to be with us long, so  dedicated these weeks to arranging everything possible that needs to be arranged in these circumstances!  I spent many weeks using the computer to compile a booklet of 'our wishes' and everything that we had arranged...  This was printed out and copied so that when 'labour' began, our midwives and doctors would all have a copy so they knew exactly what our wishes were and how we wished for things to be carried out...  It was very hard to do ~ obviously not knowing at the time what the 'outcome' was to be, but I feel we covered everything possible...

We had already bought Jack's Moses Basket, so went ahead to buy a couple of beautiful little outfits and his 'Gold Cross' and 'Gold Teddy Bangle' and lots of other little gifts for him...  We tried on many occasions to buy his little outfits, and many times left the shops in tears, empty in our arms and empty in our hearts...  We found it so hard trying to find the most 'perfect' clothes, knowing deep down that this may be the only time we were to buy for our baby...

In a way it sometimes felt that I was doing this for 'someone else'!  Feeling my baby move in my womb whilst on the phone to our Vicar Chris discussing 'Funeral arrangements' just seemed so surreal...  We made every arrangement possible if our precious little baby was not to survive, from bringing him 'home' to the 'funeral'. This in a way gave us much more precious time with Our Jack...  being able to spend every minute with him ~ knowing that the 'things' that needed to be arranged, had been...

We only left one thing till after the birth ~ buying the little trinket box to place Jacks ashes in, hoping and praying that we would never have to actually go and do this...  So sadly, a few days after Jack's birth we found ourselves doing just this... it was heartbreaking...

We had 7 weeks left of carrying Jack...  not knowing whether he would make it full-term ~ or what was going to happen at birth...  This truly was in the hands of our Lord...

Click above to go to Our Birth