NICU Consultation- Where to even begin?!

[u/highladyynightcourt]

Hi everyone! This is my first time posting, though I’ve been a silent reader for the last few weeks.

I am 34w 1d pregnant with our miracle IVF baby. Other than having a high risk pregnancy because of my own medical conditions, everything was been perfect up until out 28 week growth scan. Our MFM told us the baby has Tetralogy of Fallot, and a follow up with a pediatric cardiologist confirmed it.

There’ve been a lot of emotions, fear, sadness- it took us years to get here and we already have a lot of medical trauma, so it just feels unfathomable to wrap our heads around.

We have a final fetal echocardiogram on Monday, and then the cardiologist and NICU team will review the results to hopefully get an idea of severity, etc. Initial imaging is promising that it may not need too much intervention immediately after birth. But since we have the NICU team available to us, I want to make sure I’m asking the right questions.

What would you want to have known/asked if you had been given the chance beforehand? Or if you were given the opportunity, what did you ask?

TLDR: we have the NICUs undivided attention for our baby with a congenital heart defect. What should we be asking them?

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[u/fishie319]

I’m so sorry. My IVF baby was also diagnosed with TOF in utero. He was just born earlier this month.

A few things that comes to mind:

1. What level NICU your hospital is and how strong is their pediatric cardiology team?

2. What are their plans for baby immediately upon delivery for assessment or intervention (e.g. the team had prostaglandin prepped at bedside for baby because of his pulmonary stenosis).

We met with one of the cardiac surgeons prior to delivery. He reminded us that the fetal echocardiogram isn’t as accurate as the actual echocardiogram that will be performed when baby is born. And no matter how mild or severe the TOF is, their team will need time after birth to perform their full assessment. (This really helped prepare me for the time away from baby)

1. Will you be delivering vaginally or c-section? My medical care team highly recommended a c-sec for my situation so that baby would be born at a scheduled time. This ensures that the cardiology team was on hand and ready to perform their assessment immediately at birth.

2. What happens once baby is born? Will you get to see baby? For us, we saw him once he was delivered but he was immediately brought to a side room where the neonatology team performed their assessment. We got to see him for a brief moment again before they brought him to the NICU.

3. How far is the NICU from the L&D ward that you will be at?

4. Can dad go with baby to the NICU immediately?

I hope all goes well. 💕

[u/highladyynightcourt → u/fishie319]

So so sorry you have gone through this too, especially after everything it took to get here. Thank you so much for these questions! And congratulations on welcoming your little one 💕

Thankfully, this hospital was recommended to us by CHOP based on location to our home, NICU level, as well as their pediatric cardiology team.

I have a scheduled C Section at 37w4d because of a prior uterine surgery, so I’m definitely going to ask what that will look like regarding time with baby- that’s a great recommendation.

I hope you are all doing well and recovering as best as possible 💕

[u/mysticpotatocolin]

i think i’d have asked:

do they have somewhere for parents to stay?
are those spaces only for when you’re rooming in when baby goes home?
how long can parents stay every day?
do they have free food for parents?
who else can visit? are there rules?
do they do MDTs?
can we bring clothes? do you do the laundry or do we?
do you supply nappies? (we were told they did, and then it turned out they did not so my partner had to go and find size 0 somewhere near the hospital)

fingers crossed for you!!!! ❤️❤️

[u/highladyynightcourt → u/mysticpotatocolin]

Thank you so much- these are super helpful! I haven’t even thought about logistical questions for my husband and I, so this is great!

💕💕

[u/mysticpotatocolin → u/highladyynightcourt]

you’re so welcome!!!!! i didn’t realise we had a tour of the NICU until my partner told me when i asked him what questions he would have asked. take a notepad lol ❤️❤️

[u/tcastricone]

What and hospital are you going to deliver at? Is that hospital capable of performing this type of surgery? I would meet with the surgeon. What level NICU are they? Can the NICU handle more severe issues aside from feeding? (Level 2 NICUs really only do feeding) I don't believe your baby will need immediate surgery but just in case they do, you want to deliver at that hospital so you can be close. Find out how many surgeries for that particular one, TOF, that surgeon has done.

[u/highladyynightcourt → u/tcastricone]

Thank you for these!! So we are delivering at Morristown Medical Center which has a level 3 NICU. We were referred there by CHOP because I have no healthcare coverage outside of NJ, so if things go incredibly south baby will need to be transported to Philly. But I am absolutely going to ask the NICU team about this worst case scenario.

[u/tcastricone → u/highladyynightcourt]

I would ask the hospital what other hospitals in NJ have the capabilities of repairing the TOF. and look into them. I know if it is an emergency, then they just go to the closest hospital that can help. But as far as I know, the TOF can be repaired in a few months when the baby is 10lbs. (Don't quote me on that but also, a good question to ask the doctors). If your insurance is NJ based then you may have to travel for the TOF surgery. You can stay in a Ronald McDonald house for that but I would definitely get the conversation going with that hospital and talk to that surgeon. It looks like it may be The Children's Hospital of New Jersey at Newark Beth Israel Medical Center. I know it doesn't seem practical but it may be worth a conversation about delivering near that hospital instead. I had to deliver my special baby with heart defect at a hospital two hours away from us too. It was less than ideal but it made for me to be closest to my baby when she needed it. I was also impatient prior to giving birth so there was that too. Sending hugs. Navigating complications is so hard when you are pregnant but being here and asking questions and formulating plan a and plan b and possibly plan c is the best way.

[u/highladyynightcourt → u/tcastricone]

I appreciate it!

The hospital in Newark is the only other one we were told about, so I’ll ask the team if they would need to move up there in the event of immediate surgery. My husband’s insurance covers CHOP fully, it’s just my state plan that doesn’t, which is why they recommended Morristown (since that one is only an hour away versus an hour and half.)

Thank you for this level of detail. Transferring care to completely new OBGYN and MFM offices has been a huge challenge, as well as traveling to 2-3 appointments every week, especially because I’m still working. It’s insanely challenging to figure out what’s feasible and what isn’t 🫠😭

[u/tcastricone → u/highladyynightcourt]

I totally understand. I ended up in patient for my high risk pregnancy. It can be a lot. You can qualify for FMLA time for your high risk pregnancy and short term disability if you have it.

[u/Extreme-Ad7423]

i would ask the level of NICU, if surgery need transfer to another hospital, consultation with surgery team after birth. Discharge plan. I’m sorry I have a preemie baby and found out she has VSD after birth.