Sue's story

At 29 weeks and 2 days, after swelling up over a 2 week period, and feeling like basically I could do without this pregnancy thing, on a Sunday evening around 9pm I started having pain under my ribs. I rang maternity. They said to come in.

When I arrived they thought at first I was going into early labour. Then they tested my urine - 4+ protein. The surgeon came in. He looked at the BP monitor - he said "if that's your BP reading then your head is about to explode". He told me that I had to have a Ceasarean and now!. Baby's heart rate was falling. The ambulance that had been called to take me to the nearest hospital with an NICU was turned away, and instead the transport team from NICU in Leeds (we lived in Wakefield then) were called.

Jonathan Russell Watson was born at 1.27am 10th August 1998, weighing 2lb 10oz, APGAR score 1. My placenta had abrupted during the assessment in the hospital - his oxygen supply had been almost nil for at least 1 hour or so.

Jon was rushed to Leeds, after saying hi to his dad. I was still on the operating table. It took 10 pints of blood and 7 pints of Plasma before I finished bleeding enough for them to close me up. My kidneys had stopped.

I was out of it until the next morning. When I woke up I remembered that I was in hospital and had had an operation, but had completely forgotten about the baby, and was busy giving instructions to my husband about ringing work colleagues to cancel a meeting I was holding that day. Doctors were still all around me, worrying about my 'spikey' blood pressure.

Later Phil (my husband), brought in a picture of Jon. I turned away. I had heard he was less than 1lb 6oz (incorrectly) from Phil - and at that point I gave up hope on him. The next day, the weight was checked, and Phil said Jon was actually 2 lb 10 oz - I perked up, perhaps it would be ok.

After 2 days in high dependancy, I was transferred to Leeds. No one at Leeds seemed to know what I had been through, and they tried to get me out of bed and showering myself. You only had to look at the wound on my stomach - black, blue, green from waist height to my vaginal area to see the trouble I had been in. My breasts were swollen with milk, no one asked me if I wanted to breast feed or not, the pump was only brought when I managed to get a midwife to sit down for 5 minutes and listen to me.

I saw Jon. He was small, but not as small as some around him. For 3 days I hoped he'd be ok, and slowly I started to get a little better. Then I met Jon's doctor. He showed scans of his brain. It looked like there was bleeding caused by the stress of the circumstances of his birth. Possible brain damage.

Phil and I carried on. My wound became infected, at least we think so. My BP shot up again and I had high fever, but they took swabs and found nothing in the culture. It passed. Jon was still on full ventilation, but taking some breast milk down a tube. They put him on steroids. Slowly he seemed to get stronger - I was getting more optimistic.

I then developed thrombosis in the right leg. At first they did nothing when I complained of pain in the leg and arm, but eventually they scanned. The widwifery team couldn't believe it. By now I was getting a little more sympathetic treatment - they'd finally read my notes from Wakefield!

So I was taking Clexane for the blood clot. Labetolol for the blood pressure and as many pain killers as I could lay my hands on!

Now 3 weeks since admitted to hospital. At the end of this week I decided to go home ( by this time I felt a little like a piece of the furniture!). Jon now breathing independantly - great! Finally able to cuddle him with only 1 or 2 monitors attached.

We would have liked to have done all sorts during his time on Special Care, but once I was home, and was not fit to drive, and Phil had to go back to work, we only got in for 1 hour in the evening. Broke my heart to read "Parents did not visit" daily in the nurses book. We did change nappies and wash his bum though. He had terrible hiccups! And he could cry like a good un.

At this time they told us that to stop the pressure building up on his brain they'd have to insert a device under the skin of his head, which linked to his fluid canal to drain the excess fluid. Up to this point they'd performed spinal taps (which are dangerous because they risk infection). We had to agree. His dad signed the consent form.

We were there as soon as he came back from theatre. He was fully ventilated again, as we had expected. At first he was doing ok, so we went home.

Next day my Mum came to visit. She brought loads of baby stuff. I could walk a little way now, so she suggested we went on the train to see Jon. I wish I had done this before when he'd been in SCBU. When we got there I gave him a kiss and Mum touched him for the first time. I was talking to the theatre sister when the physiotherapist came in to attend to Jon. His heart rate crashed but I knew that was normal after Physio, we all just stood there waiting for it to come back up - it didn't. All hell let loose in NICU. I stayed for a while, but at a certain time I decided to call Phil - I didn't have his mobile number. It took forever on a public phone to track him down - via his Mum and Dad which of course set alarm bells ringing.

He arrived an hour or so later. Jon's doctor now came to see us. Jon had had a breathing crisis, and his only chance now was to go onto nitrous oxide treatment, and hopefully support could gradually be withdrawn. We prayed for a miracle and moved into the unit.

After two days of vigil, we decided that it was time to have Jon christened. Usually a time of joy, it was such a sad, hopeless event. Phil's Mum and Dad came to visit and we told them Jon was dying. They didn't believe us (Phil had been a 30 week baby in 1968 and survived), so they weren't much use to us.

I used to toddle down to Jon's crib early in the morning in my PJ's. I made many friends on the unit. But the nights were the worst - waiting for the footsteps to come down the corridor to tell you to come now - horrible.

Anyway, after 5 days of this Jon eventually gave up. His bowel had ruptured under the high dose of steroids, and there was no going back. Life support was withdrawn.

So there we all were together at last, but only briefly in the quiet room, for a final goodbye.

It's now 8 months since Jon was born, and I haven't worked since. Phil has not been well, and found adjusting to normal life again hard, and was prescribed anti-depressants which he still takes. We bought a dog, but although he is a distraction, he of course cannot ever replace our son. We moved from Wakefield to Suffolk.

It was discovered that I have a blood disorder known as Factor V Leiden. It means that my blood has a tendancy to clot. Tomorrow I get more blood results to help me determine the risk of all this happening again.

Sue