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.

@JNlawyermum- I didn’t see your comment before it was removed but I hope it wasn’t offensive to me.

How are you getting on @Mammabee20? I've only just seen your post. I'm so sorry you've had to go through all that! I learnt pretty early on to always get q second opinion if I wasnt sure about the advice being given. I'm so pleased you decided to take matters into your own hands and go to LGI! If you aren't sure keep going back. You will see different Drs who will have different opinions and experiences!

@Mammabee20 the comment that was removed was advertising herself to you for legal help . It wasn’t offensive to you. Hope you and you’re baby are ok x

I went back and got a bed on that Sunday, they kept him for a week and did every test under the sun! I had to keep demanding and pushing every day but they finally did a biopsy and it was confirmed that there was nothing wrong. He spent the next week with the same physical condition then he just seemed to thrive.

He is now 12 weeks old and he weighs 7 lbs 15, he’s been signed off from outreach and the consultants are happy enough that they don’t need too see him again.

I do feel that something was missed but I am going to wait for all the COVID 19 stuff to be over. I was due to attend a birth matters meeting to discuss everything so that may shed some light too

OP, my heart is 100 percent with you and you are absolutely correct about being worried. I have, unfortunately, been in your position, with a preemie who had a lot of medical complications and if you don't mind, I will share with you some of the things that helped me to get the care my child needed--I feel that you are on the right track and your instincts are excellent.
1. Do everything you can to keep dated and thorough notes and get as many hospital records as possible. You can also add printouts of research, etc. Put them into a three ring binder that you can carry with you if you need to go to a hospital in a hurry. This is great for thumping down on a counter and referring to if you are dealing with pain-in-the-ass doctors and you aren't allowed to use your cellphone for instant research. (also havce your note-taking notebook with you. Let everyone know that what they do shall be recorded and run up the flagpole.)

1. Be polite but unbelievably persistent. If you don't get an answer from person a, go to person b. If you don't get an answer from person b, go to person c. If you dont get an answer from person c, start talking in the hallway about what a shame it is that you're a journalist who is going to be writing an editorial about this for your paper. Doctors have a certain number of favors they can call in to get tests done or cut a line etc. If it isn't important, don't abuse it, but right now, your child's life is in your hands and it sounds pretty urgent. Somebody has to get as upset about this as you are. The time is now. It's Thursday. Whatever it takes needs to happen. This isn't a joke. It's not going to happen over the weekend. You need help now. Somebody has to wake the fuck up and take charge.

1. Doctors tend to respect people who are of the doctor class, I am sorry to say--usually upper middle class, educated people. They should find all people equally relatable, but they tend not to. So, talk to them the way you would talk to a neighbor. They aren't your superiors. They are collaborators in your child's health care. You are the field scientist, they are the subject scientists. Don't let them gaslight you or treat you like a fool.

Oh god I don't know what else. I just feel as if you are on the right track, though. Something doesn't sound right and you seem right to be concerned. My thoughts are with you--you sound like a great mother.

Oh, I just noticed that your child is much better now! Very glad to see it!!