6 week old preterm baby- poor care from paediatrics

[Mammabee20]

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.

I do think keep the pressure on but as a PP has said, low growth is common with IUGR babies. It has taken DD to 6 months to get to 11lb (She has had a couple of serious bouts of illness, also common in prem IUGR babies).

@Herringbone31- he’s not even on the centile for his length and gestation.. they said yesterday he had tailed off and that he was static at both weighs in this week and that is after they had started him on nutriprem 2.. my concern is what if he doesn’t gain again over this weekend and next week he has lost some, my only saving grace is that he has put some on slowly.

If he does have hierscprungs and it is operated on apparently he will start to thrive quicker than what he is doing.. that’s why I can’t believe they don’t deem it to be of medical urgency that he is seen too.. I mean I kept this saying when I was pregnant with him, why do things need to get worse for him before you will do something about it.

They wanted to keep him in until 36 weeks and I said why he hasn’t grown since he was 32 weeks so what makes you think he is going to get any better by then. I’ve got other posts on mumsnet about my care (which was horrific) and my pregnancy

LGI has a children's a&e, St James's doesn't, so head to LGI. The children's ward are pretty good but expect a fight as to why you haven't gone to your nearest a&e. I hope your little one is better soon.

My twins were born at 35+1. Twin 1 was 4.5lb with no health issues besides needing a bit of help breathing and feeding initially, twin 2 had IUGR and weighed 3.5lb (to be fair he was 9 weeks old before he weighed just under 5lb).

DT1 spent about a week in nicu then ten more days in special care nursery.

DT2 was in for 2 months. They diagnosed him with a super rare condition on top of various other issues (sepsis, jaundice, low platelets etc).

Rare medical conditions can be missed, but that’s why a baby of that size with IUGR should be in nicu for longer being monitored properly. TCU isn’t a proper monitoring environment.

Keep a note of everything so you can make a formal complaint - right now I would focus on getting the team at the new hospital to see you ASAP.

sleepycat do not feel you have to justify pursuing legal action. I have to sit on some panels where investigations are discussed and I can tell you categorically that the best way to get policies changed and for staff to be more aware of these things is a legal case. This is what it takes for many CCGs to sit up and take notice. Do not apologise for it.

Mothers instinct is a great thing OP and you'll be experiencing that right now. Do what you need to do and don't even think twice that you're bothering anyone. Mine saved my sons life when he was just a baby, I was fobbed off until I said no more, there is something really wrong and it ended up with a 3 day stay in hospital due to a bacterial infection in his chest and windpipe. I was told it was 'just viral'. Yeah ok. He needed IV antibiotics. Someone else I know was fobbed off too with the 'just viral' thing until she walked into her GP surgery and demanded someone look at her son properly. She was fobbed off yet again so took him to A&E and he had meningitis!

Congratulations on your new baby OP I’m so sorry you are going through this horrendous stressful time. You are doing a great job and advocating for your baby.

It’s bloody scary and you are doing it on your own from home and then in and out of hospital, which in many ways is more difficult than being stuck in nicu/hdu for months like we were.

Firstly, I wanted to let you know that it is standard practice for all babies to go to the paediatric ward once discharged from neonatal and then readmitted. Your hospital hasn’t done anything out of the ordinary here. Be assured that in the UK, many of the consultants who see your child on neonatal are exactly the same ones on paeds.

What you describe is par for the course for mums of IUGR babies, I’m afraid.

I’ve been there with a much earlier and smaller IUGR baby, for s very very long time myself, and I also work in medical research so I’ve really become familiar with IUGR issues.

I think you are going to need to adjust your expectations about how your baby eats, poos snd grows now they are born. You are going to learn the “new normal” for your child. However when you get that instinct that something is wrong , as you have, don’t hesitate to act and ask for help.

For many IUGR babies after they are born, the baby is fine. But for very many they continue to have issues relating to being IUGR.

Please join the Facebook group for IUGR babies. They are a fantastic resource, extremely knowledgeable and a great support.

There is also a preterm forum on mumsnet.

IUGR babies often have very small abdominal circumferences because they diverted blood flow from their guts to their heads and hearts when they were in the womb.

It is very common for them to have digestive problems and they are particularly susceptible to infections.

It is very common that the doctors never get to bottom of the cause of temporary gut issues in IUGR babies.

I’m glad your baby has been well enough to be home for some of the time I would say that 1kg in 6 weeks is amazing weight gain and give yourself a pat on the back. Actually I just want to come round and give you a massive hug!

Think of all the things your baby has had to do that others haven’t: work twice as hard to keep warm, to breathe, to regulate his blood sugar etc. He wasn’t even meant to be here yet! He’s never going to put on weight like the other babies, he far to busy doing twice the work of them.

Communication is everything and I do think some doctors forget how little we parents know and how bewildering it all is.

Please make sure you have a number for the transitional ward you were on or the paeds ward. Don’t worry about calling again. Ask for a meeting with the consultant paediatrician your son is under.

Finally call Bliss

www.bliss.org.uk/

Good luck

My girls had nutriprem2 with not much growth too

It can happen.

Sorry. It’s cut off

However. I would try and get to a pead dr soon.

@everythingthelighttouches

I agree 100%. You’ve written that beautifully. My eldest wasn’t even 12lbs at 1. Everyone stopped me to tell me how doll like my child was. Often multiple times a day

You have to get used to a normal.

My eldest is now 8 she weighs 17kgs. She’s the smallest of her year. The school nurse continues to ring me

I the. Went on to have a second one with also very bad IUGR issues. Also the smallest

I have a blood condition. Wasn’t picked up till I spent 8 months in hospital when my eldest was born after having CAPS. A catastrophic event. Where I had blood clots in most of my organs. A stroke. Multiple organ failure.

Blood conditions continued into my second pregnancy.

Did they send your placenta off OP?

No way would a 3 lb 8oz baby be discharged. The hospital have a minimum weight the baby needs to achieve.

Herringbone31 snap! 12lb at 1 year.

My son didn’t get onto the charts (0.4th Centile) until he was 2 years old.

He hardly drank a thing and I recorded his fluid intake meticulously ( think I’d been institutionalised) until he was 1.

He still doesn’t bloody drink now and he’s 6.
I feel I personally gained every single ounce for him through blood, sweat, tears and sheer willing him.

It is not a nice state to be in and I’m sorry OP that you have joined this “club” of IUGR mums.

I also note OP that you are terrified he is going to die. I just wanted to let you know I know what that feels like and do do many IUGR mums.

I had many prem babies, earliest was 32 weeks.

TopBitchoftheWitches
it happens all the time.

The criteria are more linked to the ability to feed, weight gain, maintain blood sugar, maintain body temperature, awake/sleep cycles than weight.

Anyway, OP’s baby was not discharged from hospital but stayed in hospital on a transitional ward for a further 10 days.

@Herringbone31- I’ve not actually been told if they sent my placenta off or not, the earliest thing of something going wrong that I know about is that at my 12 week scan, it came back that Papp-a hormone levels were low and my DS had an increased risk of Down’s syndrome. We had the further testing done and it came back that he was supposedly fine.

They did warn about IUGR but no one appeared to mention monitoring it or testing for it or anything

Hi OP. The buavent read all the replies but wanted to give a .

My dd was iugr at 29 weeks. She was 2lbs 2oz. She followed way below the 0.4th centile for the last 6 years. Recently she has gone above it on growth hormone.

She always had a distended belly. Tbh, I didn't question it as I'm not sure I knew what was right. But I remember her stomach being larger than the rest of her. I'm a T1 diabetic, so I just assumed anything bad was because of that .

I was under the HV forever. They weighed her weekly for way over 6 months. I bought a scales I was that paranoid. I spent literally hours trying to feed her for her to throw it all up. I cried constantly. My marriage broke down because her dad had an affair didn't understand.

I had a brilliant neonatologist. She went above and beyond. The fact my dd is on GH now tells me I pushed and wasn't wrong.

Keep on at the drs. The consultant rather than the GP who won't want to know with a preemie as they are scared. Push.

I didn't have testing. My poor DD did. Every test going. She is completely fine. Just still v small. Turns 7 in 2 weeks, finally in age 6-7 clothes.

I remember the panic. I remember the looks from HV and even other mums. I also remember getting myself in a state. You're a good mum, OP xx

Call the consultants secretary on Monday- see if they will move you up the list or let you come into the next clinic and wait for a slot. Just call the switchboard and ask for them.

My baby was prem and developed an issue. Over a month I repeatedly raised the issue with HV, GPS, and our actual consultant and was fobbed off. In the end I drove to another hospital and demanded to be seen. If you really think he is at risk and falling through the cracks, bang loudly. Doesn’t matter who you fuck off, you’re not here to make friends. Take him in and tell them you’re deathly concerned. This is a terrible situation but you’re being an amazing mother and being a wonderful advocate for your little son.

Bang loudly.

Hi all! Thank you all so much for your support!! I really couldn’t have got through this evening without you all 💙 I decided I wasn’t going to sit down feeling helpless and like I couldn’t do anything else for him.

My DP and I talked it through and we’ve come through to Leeds ourselves and demanded for him to be seen tonight. We are currently in A&E and they’ve not turned us away.

They are checking his X-rays that were sent over from Pinderfields and they are going to talk to the surgical doctors as the paediatric nurse says his stomach is definitely distended & the X-rays show a blockage

I will keep you all updated as to whether they admit him or do the further testing that they promised would be done today when we attended Wakefield yesterday

I hope all goes well. If you need decent drinks to get you through, there's a 24 hour Costa in the main entrance.

Good luck op

Good luck OP. My DS was also born at 34 weeks and we received very poor care for him and were fobbed off when I expressed concerns. But I am very persistent 🙂 and eventually I was taken seriously. He was very poorly when he was readmitted (at my insistence, after the health visitor told me everything was fine with him).

Don’t give up. Ask questions, take notes of the answers they are giving you. I was frequently mistaken for a health care professional (I’m not) because I learned the lingo and acronyms and talked to the staff in a professional manner.

DS is now 8, very healthy and everything is normal. But deep down, I know that my instinct saved his life.

How are you this morning mamabee ?

@everythingthelighttouches- I’m okay thank you for asking, we went to LGI and they did a couple of tests on DS that he hadn’t done before. They have got him on a list for a phone call for Sunday and a possible biopsy on Monday. They’ve also confirmed that if he doesn’t poop at all & his eating suffers or he vomits, we can take him straight back in and they will do a bowel washout.

I am really hoping they do the biopsy on Monday but at least I feel I didn’t waste my time going to LGI A&E last night

@Mammabee20. Well done mama!

As I said I had two very IUGR babies. The most severe my hospital had seen. I know that’s just genetic. I’m very small and thin. My husband is tall and thin. My kids were never going to be very tall. I had a growth spurt anyway. As I’m sure they will have.

Regardless. My youngest kept having these fevers. Every 10 days. Her teeth feel apart from the vomiting. I took her to my gp. Every time. I took her to A and E. every single time they fobbed me off with virus. Even when her bloods showed huge bacterial infection. We were hospitalised over and over. Yet I kept getting. It’s nothing. It’s a virus.

I knew it wasn’t. I knew something was going on. I googled periodic fevers. First thing that came up fit perfectly. I battled for a specialist. I saw one who was horrific. So I went private. The dr agreed to operate. I was right. It cured it all. She stopped eating. Drinking. Growing. Laughing. Smiling

I got my little girl back. But it took 2 years!

Trust your mummy instinct. It’s ALWAYS right.