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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

6 week old preterm baby- poor care from paediatrics

57 replies

Mammabee20 · 21/02/2020 16:17

Hi all, I was just wanting some advice on whether or not I was being unreasonable! My DS was born 6 weeks ago, he was born at 34 + 5 weeks. He weighed only 3 lbs 8, he was discharged from neonatal care after 24 hours because he was apparently healthy.

We were on a transitional care unit together for 10 days until we were discharged from the hospital, he was apparently a healthy baby even though he had been born with IUGR and he looked more like a 32 weeker than a 34 weeker. We were home for 3 days before we got admitted again with hypoglycaemia (low body temperature and low blood sugars) they kept him in and he maintained that for 5 days before they discharged him again.

Well 3 days after being discharged outreach came out to the house and they said have you noticed his stomach it is all distended and bloated. I said he had just had a feed.. they rung an ambulance and we were right back in again.

At the hospital they did an x ray and they noticed some blockage but there was a lot of gas so they decided to drop his feeds so his belly went down. We were on monitored feeds for a week before they advised they were happy with him and they discharged him. I am not happy at all by this point because we had seen the effects but we were no closer to finding out the cause and we were being sent away again with no further tests. They told us to keep his feeds down and he would be seen by a clinic within 4 weeks..

The Saturday after he got discharged his belly distended loads and when I was changing his nappy I massaged his bumhole and what looked to be a days worth of poo came firing out. We took him straight back to A&E and they said they would bring the appointment forward two weeks.

Sorry if this post is really long but we are now up to this week, we had outreach out on Monday and Wednesday and they confirmed they are seriously worried about his lack of weight gain, he has only gained 1kg since birth so he weighs 4 lbs 8 now only and he is 6 weeks old. We went to the clinic yesterday and they said they were really worried and they wanted us to have another X-ray done and they were not ruling out hierscprungs, which is a very serious medical condition that babies are born with. They said he would need to be referred to LGI hospital where they can do a biopsy and that we can either go in that night or they will call us tomorrow with when we can go in.

They’ve now rung us today and told us that the consultant doesn’t seem to think it is an emergency or that my DS’s state is dire. They will ring us early next week for them to arrange my DS going in and they will take it from there.

OP posts:
Selfsettling3 · 21/02/2020 16:20

Ring your hospitals PALS service.

Doyouwantanothercuppa · 21/02/2020 16:26

My goodness this sounds awful. I would be pushing this with anyone and everyone. Neonatal outreach team? The unit themselves. Get the number for his consultant and keep calling. So sorry you’re going through this.

NoIDontWatchLoveIsland · 21/02/2020 16:26

I'm stunned a 34+5 weeker weighing only 3lb 8 was discharged from NICU in 24 hours.

DD was 3lb 9oz at 33+6 and was IUGR (we had known since 22 weeks). She was in the neonatal unit for 2 weeks proving she could breathe, stay warm, eat & consistently gain weight.

Call your GP, also contact your HV team, have you got a child health drop in you can go to for more support?

Original poster
Mammabee20 · 21/02/2020 16:33

My AIBU is that i am right to be completely disgusted by the fact that this condition should have been picked up at birth and that there is a big lack of care my son is getting and that if this potentially life threatening disease doesn’t get sorted ASAP that something could happen to him and he might die.

He has only 20-30ml every 2-3 hours because that is all he can tolerate.. he only poops once a day and he cries for 1-2 hours when he needs to go. He hasn’t gained weight or grown at all since birth and because he was so small to begin with I am now concerned that after 6 weeks he should be thriving a little bit more and he’s not.. which means he might start to deteriorate and I am concerned and I keep worrying what if his body system shuts down as a lack of energy because he is burning so much digesting food and pooping it out once a day.

AIBU to be absolutely fuming Angry and to come to the conclusion that somewhere along the way someone has majorly ballsed up and my sons health is majorly failing as a result. We have tried everything from higher feeds amounts with longer periods into between feeds and smaller feed amounts with shorter periods in between feeds and nothing seems to work. We’ve even started giving him extra calorie formula as they apparently thought my breast milk was the problem.. so now we are alternating his feeds 3 hourly 30mls of formula and the next feed 30ml breast milk

OP posts:
Original poster
Mammabee20 · 21/02/2020 16:38

@NoIDontWatchLoveIsland- I thought exactly the same! We had no idea about the IUGR- they had warned me at 12 weeks about it and put me on aspirin but until the 32 week scan they didn’t tell me that he was too small, just that he was small. It was the 34 week scan that confirmed something was wrong as he hasn’t grown at all in those two weeks.

They put us on transitional care at Pinderfields, Wakefield together so he could prove he was maintaining temperature, feeding well and gaining weight. They discharged us from that ward within 10 days and we were back in 3 days later but we had to go to the children’s ward instead which I thought was disgusting.

I feel like he is slipping through the cracks and he is already 6 weeks old and is not thriving at all.. he’s only 4 lbs 8 for Christ’s sake.

My main fear and this has been my fear since week 34 is that he is going to die Sad

OP posts:
ForInstance · 21/02/2020 16:41

Hi OP, no advice but Flowers and doesn’t sound to me like YAB at all U. The end of your post is what made me saddest of all - they clearly have no clue what’s going on wit your DS and aren’t listening properly, but of course they find it in themselves to suggest that your milk is at fault 😡 How flipping typical

user1493413286 · 21/02/2020 16:42

It sounds awful; can you take him to another hospital? Go to A&E and see what you help you can get there? My 32 week baby was 3ib,13oz and kept in hospital for 2.5 weeks and then I had weekly visits from outreach (3 visits in the first week) to make sure she was gaining weight and there has always been a “let’s be on the safe side” approach to her care

ForInstance · 21/02/2020 16:42

^ sorry, I cross posted with your last post. Obviously your fear that your poor DS will die is the saddest thing of all.

Schuyler · 21/02/2020 16:43

YANBU and I’m sorry you’ve had such a bad experience. Must be so scary and horrible for you. Please do make a complaint, if and when you feel able.

Schuyler · 21/02/2020 16:44

Just to add, is there an A&E at the LGI? If you continue to be concerned, can you take him there?

Sleepycat91 · 21/02/2020 16:47

I could of wrote this. DD was born at 35+1 and 5lb4 so i had to do a 5 day stint on the ward. She pooped meconium, and then day 2 it stopped and..nothing. she was projectile vomiting a yellow stinking substance constantly and i couldnt lie her flat or it would happen aswell. She was xrayed at a day old for distended tummy and 2 Drs and they said no theres some gas but its traveled down the intestines so its fine, as long as the vomits not green shes fine. I could barely get more than 15ml at a time in her and was still struggling with the vomit. Day 4 an MCA argued and argued until nicu looked at her, they aspirated her stomach and she been puking up poo the entire time. No one listened to us. And the xray done was never looked at by someone qualified. If it had been, the loops in her bowel would of been seen. She was blue lighted to a specialist NICU and they did 3 contrasts and blood test after blood test and nothing showed so she HAD to have surgery. I was told they were surprised she was okay because her heart and lungs should of been failing but her body had saved her and made a sticky mass around the 3cm of her bowel that had twisted and died. She was 4lb4 by this point and her skull was sticking out. Op was done at a week old. The original hospital started an investigation the second we left and i should be getting it in a few weeks. Im thinking about going forward with a medical negligence but ONLY for the reason they think she lost an ovary in the mass her body made and i would do it only incase of her having fertility issues later on.

Bogoffrain · 21/02/2020 16:48

Could you try the a&e at Sheffield childrens hospital? You must be beyond worried Flowers

LaurieMarlow · 21/02/2020 16:53

Jesus this is awful OP. I’d be heading to A&E in a different hospital if I were you. And don’t leave til you have some answers.

NoIDontWatchLoveIsland · 21/02/2020 16:55

I think you said he had put on 1kg? That's around 2lb, in 6 weeks for a baby starting at 3lb 8 that's not bad

DD put on about the same and that was considered pretty good. Is he following his centile line?

Sorry I don't really know anything about hirschprungs and how soon it can be detected after birth.

Original poster
Mammabee20 · 21/02/2020 17:10

Sorry I meant he was 3 lbs 8 when he was born and he weighs 4 lbs 8 now Sad

I’ve rung the hospital again and I’ve just had a crying angry meltdown on the phone too them, they said there was nothing else they could do as LGI is taking over his care and if they said they would sort it next week they will. I am fuming and I am going to drive to Leeds Hospital myself now and demand for him to be seen

OP posts:
Star81 · 21/02/2020 17:24

Def keep the pressure on them. I wouldn’t be happy at all if I were you x

Bogoffrain · 21/02/2020 17:24

You are his mum and you know if he’s not right, they have to listen to you

JustDanceAddict · 21/02/2020 17:29

I’d keep up the pressure - take to a&e if you have to.
NOt the same but DS had some issues at birth and they were on it straight away, thankfully turned out to be nothing but he had worrying symptoms which needed to be investigated.

Hugtheduggee · 21/02/2020 17:30

It sounds like he is having quite a lot of medical attention and supervision (3 appointments this week) and he is eating some, pooing some and putting some weight on, and there are plans for more investigations very soon.

Providing he doesn't get ant worse, then I'd just wait till they contact you next week.

I can see why you are worried, but I think his early start may have heightened your anxiety somewhat (perfectly understandably)

Mummyoflittledragon · 21/02/2020 17:31

Good luck. I hope your ds will be ok. This must be so scary for you Flowers

Herringbone31 · 21/02/2020 17:35

I had 2 very severe IUGR babies. My 32 weeker weighed 2lbs. My 35 weeker weighed 3lbs.

Slow growth is well known within IUGR babies. My eldest weighed 11lbs at aged 1.

My youngest was only in neonatal care for 6 days.

Are you under a pead dr?

Herringbone31 · 21/02/2020 17:39

To put your mind at rest. Mine were never at 4.8lbs at 6 weeks. My youngest wasn’t that till around 4-5 months

There are many of us parents here who have been through the same.

Can you afford to have a private consultation?

Herringbone31 · 21/02/2020 17:39

Is he following his centile?

itsabitofamess · 21/02/2020 17:44

@Sleepycat91 you should definitely think about pursing a medical negligence case. Your poor daughter. Make sure you take your time in choosing a lawyer - do lots of research - they are not all equal and you don't want a claims factory.

Op I'm horrified at the care you have received. Please complain to pals but also take your child to another hospital.

bridgetreilly · 21/02/2020 17:47

YANBU to be worried for your little baby and keep pushing to get the care he needs.

But I do think YABU to be angry about the care he's had so far. It sounds to me like he's had a lot of good care, but it's just not possible to diagnose everything at birth, especially for premature babies. He is eating, he is putting on weight, albeit slowly. He's going to be fine.