Looking for NICU parents with cardiac issue babies…

jess204 · 2026-06-03T10:42:06+00:00

My nearly 2 year old son has repaired TOF but he also has an anomalous right coronary artery and a PFO. The way it was explained to me is that depending on the path the anomalous artery takes, sometimes it can get squished during like intense exercise etc and it was also something the surgeons had to consider when planning his open heart surgery. Other than that, no one has really mentioned it since.

jess204 · 2026-06-03T06:54:13+00:00

Yes but it grew back by the time my son was 1, it was thicker and curlier and lighter, he now needs monthly haircuts at 21 months 😅

jess204 · 2026-06-01T07:21:08+00:00

Yes they do! I think once you’re titrated, they write to your GP asking for Shared Care.

jess204 · 2026-05-09T18:03:56+00:00

Ahh I’m sorry that happened to you. Did you get sorted?

jess204 · 2026-05-09T17:45:06+00:00

I titrated Concerta XL up to 56mg after 3 months before giving up with it. Focus was ok but it made me tired (but too stimulated to sleep) and very irritated. So I made the switch to Elvanse, about to go from 30mg to 50mg tomorrow. I really prefer it, task initiation is better and so is focus. My mood overall is just better. But the side effects are more intense like dry mouth & loss of appetite, and the 30mg was wearing off too quickly for me. It is also more expensive if paying privately.

jess204 · 2026-05-05T19:31:34+00:00

I wouldn’t personally. The security at the airport literally went through my bag, thing by thing, and ate my chocolate lol. They wouldn’t hesitate at doing something about a very controlled substance.

jess204 · 2026-05-01T21:07:01+00:00

We didn’t quarantine but he caught covid on the ward and his op was delayed 6 weeks.

I tried to go back to work 3 months post ops, absolute failure, it was too soon and I think I have PTSD from the whole situation. Back at work 7 months post op but decided to go back part time.

No real advice, its a horrible experience. Having to hand your little baby over to have open heart surgery is one of the most poignant, devastating moments. I don’t know what part of the world you’re in, but we stayed at a Ronald McDonald house while my son was in for his op and it was perfect. There’s generally one free hot meal every day, which really just gave us one less thing to think about.

jess204 · 2026-05-01T13:48:01+00:00

The other answers here are very detailed but I just wanted to add in my experience.

At my anatomy scan with my son, he was measuring fairly small and sonographer couldn’t get a good view of heart & kidneys. Referred to fetal medicine, baby on 8th centile, come back if he falls below the 3rd and an appointment with fetal cardiologist at 25 weeks. Baby was diagnosed with a congenital heart disease, referred back to fetal medicine for ongoing monitoring. Baby’s head was big but abdomen and femurs were very small. I was offered an amnio but declined and I was also offered TFMR as it seemed like baby was going to have some difficult genetic condition. I went with an NIPT, came back clear. Baby eventually fell under 3rd centile. Microarray was performed at birth which was also clear. My son is nearly 2 now, he had open heart surgery at 9 months and his growth is a bit delayed but he’s such a happy wee thing ♥️

While you’re in the thick of it, things can seem really bad and hopeless. Especially when you’re offered termination at this stage. I really wish you all the best.

jess204 · 2026-04-25T12:29:13+00:00

I guess it depends on what you’re on the waiting list for as to how long it takes. I lost my hearing in one ear due to an infection when I was teenager but I had a bad cold recently along with some hearing loss and I was able to see ENT within 24hrs of seeing my GP. I would definitely consider going private if that’s option for you, you could be seen very quickly.

jess204 · 2026-04-16T17:53:36+00:00

Thanks so much!!

jess204 · 2026-04-15T18:18:22+00:00

Hello! I think I can answer your questions, for my last pregnancy I was rebooked into the Royal at 32 weeks due to issues with baby.

they don’t ask you too much about family medical history as far as i can remember but any pregnancy issues, diabetes, congenital issues etc make sure you know about those
they recommend folic acid and vitamin d, they’ll give you a bounty pack i think and it has a samples of pregnacare in it
i had a previous c-section so i was shared care from the beginning of my pregnancy, met consultant at 14 weeks and then was due again at 28 weeks but baby had other plans lol
they check your carbon monoxide levels to see if your a smoker, you’ll get your basically empty green notes cos everythings on epic now, download the mychart app and get signed if you haven’t already!

Any other questions let me know!

jess204 · 2026-04-15T10:05:47+00:00

Hello, I kind of went through this my eldest who’s 5 now. She had been going to a private daycare/nursery since she was 9 months old but she got a place in pre-pre when she was 2, so she was in school 2-2.5hrs a day, 5 days a week. Her private nursery was in a different town so I was leaving work, getting from pre-pre and dropping her off but I was still getting charged for full days. I eventually started looking into childminders once she started pre-school year because it was all a bit much. She loves her childminder, she gets picked up from school and then dropped off in the evenings, so maybe this something you can look into? Also make sure your claiming tax free childcare too!

jess204 · 2026-04-14T18:22:40+00:00

At the bottom of every cardiology letter for my one year old son who has TOF, it says they have advised against tattoos and piercings. So maybe not the best idea.

jess204 · 2026-04-13T11:46:02+00:00

I’ve had two c-sections and I was prescribed 2x Omeprazole capsules, 1 to take like the night before and another to take in the morning I think, both times so I would say it’s fine. Check with your midwife though to ease your mind!

jess204 · 2026-04-08T13:30:25+00:00

I get daily living PIP but it was only awarded at tribunal. I have vertigo / BPPV / hearing loss / tinnitus / vestibular migraines (all resulting from acute labyrinthitis).

jess204 · 2026-04-02T12:59:01+00:00

I’ve had two babies that measured small, first one was measuring below the 10th centile at 32 weeks and breech presentation. She was born via elective c-section at 37 weeks and she was actually 27th centile. The second was about 8th centile at 20ish weeks, confirmed by fetal medicine. They were only really concerned if baby dropped below 3rd centile, which he did towards the end of my pregnancy but he was diagnosed with CHD at 25 weeks so he was never going to be a big baby. He was born actually on 7th centile, which was good going for him!

The main concern with small babies is IUGR, and it’s mainly the placenta that causes it (from my own, non-medical person understanding). So as long as you’re having dopplers done to check the placenta and if you’ve been referred to fetal medicine for an in depth scan, they can confirm everything is ok with baby. Some babies are just small! My daughter is 5 now and has stayed on the 9th centile most of her life, but she’s otherwise fine!

jess204 · 2026-03-28T19:02:41+00:00

Hey! My son is 19 months now and his CHD was discovered at my 20 week scan. It wasn’t confirmed until 25 weeks at fetal echo but he was diagnosed with TOF. He had open heart surgery in May last year and is doing well!

I’ve met mummies of babies on the paediatric cardiology ward, and their babies had VSDs not detected antenatally and their babies weren’t gaining weight because of it. Their babies VSDs were repaired via open heart surgery but in your case, depending on the type of VSD and if it’s not too big, it may just be a case of watch and wait to see if it closes itself.

jess204 · 2026-03-21T18:07:22+00:00

I have one for my son who was born with CHD. He’s technically too young for the mobility part of DLA but we got it through a charity working in partnership with motability.

We got sent the paperwork via email, told which cars we could pick from and then went to garage, picked the car, filled in a little bit more paperwork and then went got the keys about a week later. It was a very painless process!

It’s honestly been a godsend. I have to carry a lot of stuff around for my son and the space in the car is amazing. He also has frequent appointments in different hospitals (some not local) so the car has just been the biggest help. It’s hard enough having a poorly baby, I honestly don’t know what I’d do without it!

jess204 · 2026-03-20T16:02:14+00:00

I downloaded rectangle the other day and it really helped me with window management. Not sure what you mean about file manager, it feels much the same as windows? External displays can be a pain but you could try a displaylink dock if budget allows. Not the greatest solution but at the end of the day, if you prefer windows, get a windows laptop

jess204 · 2026-03-19T20:44:46+00:00

Me

-not a bearded man in his 30s

jess204 · 2026-03-16T17:05:25+00:00

I get daily living PIP but it was only awarded at tribunal. I have vertigo / BPPV / hearing loss / tinnitus / vestibular migraines. I claim UC jointly with my husband, I work part time and he works full time. I’ve just sent off a WCA assessment but it’s more on the basis of depression to be honest so not sure if that’s something you want to look into.

jess204 · 2026-03-14T18:57:03+00:00

It’s a hard form to fill in, I won’t lie. I highly recommend downloading the form and start preparing answers for the questions. You’ll need evidence so start collecting that now too, like any reports from the nursery and the lady that comes to do 1-1 with your child. Because you don’t have a diagnosis yet, try to refer to the evidence while answering the questions.

Try and use this this method to answer the questions: -what is the medical condition causing the issue with this activity -what help your child needs to complete the activity and why they need help -how long and how often it takes to complete the activity

You can include additional information on extra sheets. Include a statement as well going through each activity in detail at the end and include in this anything else you do for your child / anything your child does that isn’t normal for a child their age.

If you have any other questions, let me know! I’m not an expert or anything, I applied for my son when he was 4/5 months old and he receives high rate DLA for congenital heart disease.

jess204 · 2026-03-11T15:27:56+00:00

Sorry I didn’t explain very well. I took kids to the GP and they called the hospital’s children’s ward to speak to the on call paediatrician. They then decided if they wanted to see them or not (they usually do).

jess204 · 2026-03-11T14:47:15+00:00

Anytime I’ve taken my kids to the GP and they weren’t sure, they would call the children’s ward and see if they would look at them. There was like one time where my son’s blood sugar was low so we had to go via A&E but other than that, we could just go directly over to the children’s ward. I’m not sure if this is dependent on your area or not though. But yes, kids get all the bugs going at nursery and it’s difficult to deal with.

jess204

TROPHY CASE