This is chapter 5 (last chapter) of a true Cinderella story; the story of my first baby’s life and death. D is for Death a subject for some reason I like to blog about!
In my book ‘Every Family Has One’ the difficulties Kathleen faces in childbirth mirror some of my own experiences. But my baby didn’t die in childbirth. But as you will find out later in this serial of her life it might have been better if she had died at birth. It’s something I have often pondered.
Here’s the link to ‘Every Family Has One’:
Chapter 5 (last chapter)
How can a new mother ever know what a normal feeding pattern is? Having now had three healthy children since Cindy I have my own strong opinions about feeding. Babies want to be feeding most of the time. They want to be latched onto a nipple. So let them I always want to say to new mothers! You have to go with the flow, excuse the pun!
But feeding remains a contentious issue and the subject of much conversation. At around 10 weeks gestation we went home. I met up with a few mothers and watched their babies wolf down big bottles of milk. But poor little Cindy was still struggling to feed. She fed through a special bottle with a long teat designed for clefts/hair lips. But I was constantly feeding. The dietician set a target of 60 mls every 3 hours. The nurses were intimidating and didn’t believe me when I told them how long she was taking to feed. ‘She drank 60 mls in 10 minutes for us’ they would snootily say. I started to keep a diary and noticed a pattern was developing. Each day she was drinking less milk yet it was taking longer and longer to feed. I sat there all day feeding unable to do anything else. The nurses tried to help me by suggesting ways of tickling her cheeks and positioning the teat at different angles. I felt that it was my fault – I couldn’t feed her properly! But for me the answer was to return to a gastro nasal tube to give her heart a rest from the stress of feeding but they said that was going backwards. She would lose the ability to suck.
Over the course of late February and March her feeding was constantly being assessed and we return to stay in hospital several times. By then she should have been taking 400 mls a day but by early March was only drinking 370 then 355, then 300 and then 285 and finally at 235 I rushed her back to hospital. They weren’t that concerned. They said she wasn’t losing weight. I said but she’s not gaining weight either! They kept reminding me that overall she had doubled her birth weight. She was now, at 3 and a half months old nearly 6lbs. She was 2lbs 14 at birth.
She was readmitted and they decided to refer her back up to Great Ormond Street to have her cleft palette assessed because the quick they sorted that out, they reasoned the feeding problems could be solved. But it didn’t take an expert to see that there was more to the feeding problem than simply sorting the cleft out. She was struggling I believed because of her heart.
The morning she was due to go to Great Ormond Street I knew that something was very wrong. We entered the ward and looked at her. Her breathing was irregular. She was panting and wheezing and so I alerted the nurse but she said she was fine.
A Ford Fiesta arrived to take us to Great Ormond Street. I think the driver was a volunteer. His grandson sat next to me and Cindy in the back and kept sneezing the whole journey and asking his granddad for more sweets. I was surprised he was allowed to bring his grandson. The boy got very bored and as we sat in heavy traffic in south London he started to poke Cindy. And then I noticed something was very wrong.
She began to foam a rusty red froth at her mouth. I dabbed her mouth. But more red foam came. The boy next to me was bouncing in his seat. His granddad asked him ‘you enjoying your ride out lad?’ The red foam kept coming. I asked the driver to hurry.
As we approached the hospital entrance alarm bells were ringing. We ran into the consultants room where nine consultants were waiting. Cindy was growing pale then a shade of blue. One of the men asked ‘is she normally that colour?’ ‘No something’s wrong.’ They whisked us up to intensive care.
After delivering her to intensive care I went back down to find the driver to tell him not to wait. He was in the cafe. To this day I can’t believe what he said to me.
‘Blimey, it’s all go in my job. Well I’ll certainly have something to tell the Mrs when I get home.’
That evening the doctor told us she was ‘very poorly.’ They always use that word. When someone is at death’s door you never hear them say very ill. It’s always very poorly. The doctor thought she probably had pneumonia.
When we arrived on the ward we were astonished to see how bad things were. She had lots of different drugs going into her veins and looked so unwell. She had also nearly lost her leg. While they were inserting syringes her leg had gone into spasm and was nearly paralysed. They were keeping a close eye on it and pumping her with drugs to stop the blood clotting. She had also been seen by a physio who had been trying to dislodge phlegm from her lungs. This treatment wasn’t enough so the next day she went on a high pressure ventilator – an oscillator. We were told she would only be on the machine for 24 hours because it might damage her lungs any longer. Hopefully by then the anti biotics would work.
I asked one of the nurses if she was going to die and she gasped ‘oh lovey of course she isn’t. You mustn’t think like that.’
But 24 hours later she was still on the oscillator and x rays twice a day over the next few days showed no improvement to the lungs. They then decided to try her on nitric oxide in addition to the oscillator. Still the x rays showed no improvement. Then they tried to drain the lungs via a tubebut they filled with air and this became an added problem. She also had several blood transfusions because her oxygen saturation level had dipped.
One evening a nurse called Anne asked us how we would felt about all the intervention. She hinted that the end was coming. Neil hated the counseling approach and left the room. Later on he was angry and said ‘she doesn’t want Cindy to live. She’s a bitch. She couldn’t care less. The other nurses are always checking her drug levels and monitoring things but she just sits there reading a book doing fuck all.’
Seven days on from when we had arrived one of the doctors showed us the state of the lungs on the x ray. He state they needed to bring the pressures down within 48 hours otherwise her lungs would be permanently damaged. Even with lower pressures her chances of survival were very slim. All the organs were now damaged by the oscillator and the drugs.
The following day her condition worsened. My sister recently back from South Africa came up and the three of us sat in the pub, a gloomy threesome. ‘I wanted to come chick’ she said ‘at least then another woman will have gone through it with you.’
Returning to the room from the pub her condition had worsened. She was yellow and puffed out. The tubes in her side were oozing blood. Her leg was spotted with clots.
I asked the nurse ‘how long can we go on like this?’
‘Ive called for the consultant.’ She said.
When the consultant came again we examined the x rays. They were aiming to reduce the pressures from 29 to 20 but there was no chance now. It had been a particularly nasty bout of pneumonia – a rare type of e coli. He said that nitric oxide had been purely experimental, a method not used before.
The nurse asked if we wanted her christened. We said yes but in hindsight I wish we hadn’t. A creepy Christopher Lee figure entered the room offering no comfort only a string of rituals. The nurse started to remove the tubes draining her lungs. It was a horrible sight and unbelievably I took photos! I asked if they could keep her alive until midnight because at midnight it would be Mother’s Day and I wanted to remember always on mothers day. At midnight Neil gave me a box of chocolates and a cute mothers day card with a bunny on it. The nurse left us while we cried then returned and asked if we were ready and then she removed the mouthpiece.
The nurse picked her up and carried her out. Today that wouldn’t happen. I’m sure they would have been more sensitive and asked if I wanted to hold her.
The next day my parents in law came to collect us. The four of us sat in a room in silence while staff prepared a ‘nursery’ with a cot for us to ‘view’ her. We didn’t know what to say to each other. Everyone was lost for words. My father in law broke the silence.
‘I’ve never organized a funeral. What do we have to do?’
It was the last thing on my mind.
My mother in law went n to see her. I didn’t want to. But when she came out she said ‘Oh Jo you must go in. She looks so beautiful.’
I went in and wish I hadn’t. It was a room with soft lighting and baby decorations and she was lying in a gorgeous crib in white bedding and a pretty dress. Her cheeks had been rouged and her lips made pinker with lipstick. But this wasn’t like another other baby’s nursery. It was lovely but it was quiet and eerie.
***
The editors of ‘Clinical Dysmorphology’ set up a discussion board on the internet. Cinderella was their first case. The purpose was to display undiagnosed cases and invite diagnostic suggestions from clinicians around the world. We were given a password but when I divorced Cinderella’s father the password was forgotten and I now want to contact Great Ormond Street to find out if any clinicians have made comments.
The post mortem revealed:
- Severe growth retardation
- Hypocalcaemia
- Raised LH and FSH
- Cleft lip and palate.
- Large secundum ASD
- Absent left kidney
- Absent ovaries
- Absent right thyroid lobe. Enlarged parathyroids on the left.
- Normal thymus.
- Annular pancreas.
- Absent olfactory nerves
- Abnormally open opercula.
- Frontal gyri and superior temporal gyrus.
- Inferior olivary nuclei.
Despite googling I’m really non the wiser.
I only have one question…… WHY?
The sad thing is I cannot really share all this with a new partner. I did send my current boyfriend the link but I know he hasn’t read this blog. That hurts to be honest because who we are today is because of our past. Our past lives on within each of us. The people we loved are still in our hearts and should be shared with new comers into our lives. Only my husband went through this with me. Our children are our past but the only link we have.
And now? I’m going to contact Great Ormond Street and find out if the passing of time has brought any new information. This will bring closure. Without closure it will never really be The End.