Anyone have experience of newborn having surgery - particularly lung surgery?

[mrsgboring]

I know I can only get the very vaguest idea by asking on here and it's not necessarily relevant to our situation, but I have to wait till 32 weeks to meet with the paediatric surgeon and I want to obsess now.

So, my baby is likely to need a growth removed from his/her lung at birth. If you have had a baby who had surgery, can you tell me a few things from your experience? Apologies if these questions are way off - I don't know what to ask really.

1. Did it affect how much you were able to spend time with your baby? e.g. SCBU, cuddling, holding etc? Did they ever make you leave baby in hospital and go home?

2. How long did the wound take to heal? Did your baby come home and you have to care for the wound yourself at any point? Did the wound cause problems in day to day baby management, e.g. putting in carseat, sleeping, changing or using a pram/buggy/sling?

3. Were there any clothes or equipment that you found particularly helpful / necessary (perhaps stuff you wouldn't ordinarily need)?

4. Did your baby have to be on oxygen at any point (no idea if mine will need this or not) and if so was it difficult to manage the cylinders, and was there any tricky admin involved in getting hold of them etc?

5. What do you wish you'd known at the start of the process?

Thank you so much. Any info or experience is better than none - I just have nothing to go on at the moment and am a planner generally.

Bumping for you.

mrsg - I think I posted on one of your earlier threads. I'll try and answer your questions from my friends perspective.

1. The hardest part for my bf was that her baby was taken away immediately to GOSH so she had barely given birth and didn't actually get to see him after delivery. She was transferred to GOSH about a day after her baby was born as she had slight complications during the birth. She says that she was absolutely not prepared for this.

Her baby was in special care for a few days - was on life support, but stable, until the specialists were able to scan and plan the surgery. I think baby was operated on whenwas 4 days old. During this time they weren't able to pick up, but could touch and hold hands etc.

Post op baby recovered very quickly - on oxygen for first few days then other lung started responding and able to be off oxygen- think transferred to local hospital about 5 days later and then a few days til back home.

Mum was allowed to stay in GOSH in same room. She said the staff were great in helping you manage the equipment etc.

2. re: wound. Baby's wound healed really quickly. I was amazed at how quickly. No infection etc. She did keep him in a pram rather than car seat as wanted him to be as flat as possible for as long as possible to allow his lungs every possibility to grow back.

re: clothing - she just used normal babygrow. Didn't need anything else.

5. Having supported her through this I would say that she would say that the last few weeks of her pg and first few months following the birth were v traumatic and she didn't get the opportunity to allow herself to recover physically or mentally from the process of giving birth.

It would perhaps be worth exploring support around postnatal traumatic stress which I know really affected my bf.

Hope that is of some help? Her baby is now 9 months on and is doing really well and to look at him you would never know what they'd be through.

MissisBoot thank you so much. I do remember you posting on an earlier thread of mine too. It is very helpful what you've said and helps me know where to direct my thinking.

We are lucky in that our local hospital is one of the major centres, so I hope we are unlikely either of us to need to be transferred (though I do know people with prem babies who ended up being transferred out of area owing to cot availability).

Last few weeks of pg are going to be hell anyway, given my history of having lost a baby at full term.

Oh God.

Still, at least we can be prepared.

The positive thing about your case is that they have discovered it early and are monitoring you properly.

I'm glad you are going to be in a hospital with a maternity unit and specialist paediatric surgery care.

Are you hoping for a vaginal delivery?

IIRC my friend was 38 weeks when she was induced as the baby was at risk of hydrops.

my DD was born 12 days overdue with no apparent signs of poor health. Within 15 hours of birth (ie the morning after she was born) the midwives picked up that she had a blockage in her bowel and was moved straight into the SCBU. She had to be transferred that night to another hospital and was operated on at 3 days old.

Once she was in the SCBU (at both birth hospital and surgery hopsital) she was put on a heated cot so just lay in a nappy and had a tube down her nose, heart monitors on her chest and cannulas in both hands. Pre op the nurses let me hold her briefly but we were pretty much retstricted to just touching and stroking.

Post op she was on a morphine drip and had to be on a ventilator for a few days as the morphine can make babies 'forget' to breathe as we were told. I don't think I got to hold her again til she was about 6 days old and then I had to be careful with all the wires and tubes connected to her

If your baby is going to be in SCBU for a long time I would suggest buying some good handcream! You will find yourself washing your hands so many times that they will probably get quite raw.

If you are planning on breastfeeding, see if the hospital has a breast pump you could borrow. Failing that make sure you get hold of one as soon as you can as it would make sense to start expressing as early after the birth as you can. Most SCBU have 'expressing rooms' where you can use their pumps with sterile bottles etc but don't get despondent if in the early days you only manage to fill a few mils of milk whilst others seem to produce gallons! Most SCBU babies we saw were fed via a tube through their nose every 3 hours which is why the milk either needs to be expressed breast milk or formula. Whilst I was at the hospital every morning and evening, there were often days when I only got to actually breastfeed my dd once or twice.

Some of the emotional downsides I found were having ante natal friends who all had their babies at home and were swapping birth stories and other experiences. Because my dd's problems had not been anticipated I pretty much got pushed into the background once they were picked up. We were also in hopsital over a particularly gorgeous Easter and it was hard listening to all teh stories of my friends going for walks in the park etc with their LO - ie all teh things I'd been dreaming of doing with my own for the previous few months

In their wisdom the medical teams decided that it was best to transfer my post natal care to the new hospital as they thought I would be there most of teh time. Only trouble was, my dd's surgey was on day 3 (baby blues day) and i had to go to the maternity ward to be seen by someone. There was no one free at teh time of my appointment and i was asked to sit in a corridor and wait. Needless to say sitting listening to new born babies crying and seeing proud dads arriving with car seats to take their LO's home when I hadn't even held my dd for 48 hours left me howling in bits, so just watch out for unexpected hormones.

Umm think I'd better stop now but if there's anything more specific you wanted to know, just ask

Thanks again, MissisBoot. Am hoping for a vaginal birth I think as I have had two induced births before and the recovery was fine both times, but am very scared of both the pain and the worrying about the baby's health, so possibly won't be too devastated if it ends up being a section as at least the process will be a bit more predictable - probably the best situation to be in really

Ellymae, that's very helpful to know, thank you. What a hard time you had at the beginning, and it must have been a really big shock for you suddenly being plunged into the world of SCBU etc.

I am actually still breastfeeding my 3yo, so I'm hoping that will help with the expressing, but have always been rubbish at expressing before. At least if DS carries on feeding I've got more chance of being able to establish breastfeeding eventually. I am hoping to start stockpiling colostrum in a few weeks' time, in readiness. It's something I'll be asking the paediatricians about anyway.

re: the birth - my friend was encourage to have a vaginal delivery. She said that she found it quite hard to 'let go' and actually push him out as she knew that then the hard work and uncertainty would start.

She also expressed and tube fed.

Let us hope we actually get that far. It is most likely we will. Interesting that they encouraged your friend to have a vaginal delivery. I shall think along those lines then. Thanks again.

mrsg, yep we had a pretty traumatic time but reading through this thread again I don't think it can be as soul destroying as what you went through losing a baby. One of the friends I made at the SCBU had twin girls the day after dd and unfortunately she lost one after 24 hours. It has effected her badly and like you is due to have another child in a few weeks and has not endured the happiest and worry free pregnancy that anyone else would normally hope to have. My heart goes out to you as I cannot begin to imagine what you are going through.

I was thinking last night of any other tips I could give you and the main one that sprang to mind, was don't let all the medicial procedures get in the way of you capturing the start of your lo's life in pictures. My dd was born after a long induced labour and whilst I am a huge photography enthusiast it didn't occur to either dh or me to take any pics of her immediately after she was born. Once I'd been stitched up and bathed it was midnight and to be honest all I wanted to do was sleep- the photos could wait til next day. Of course the next day brought its own problems and the camera never came out. Luckily a couple of hours before she was transferred one of the nurses in SCBU took a digital snap of her and for a nearly a week this was the only picture I had. dh had taken one on his mobile when she was 3 hours old but that was it.

Whilst it seemed strange taken photos of her post op on a ventilator, we felt important to do so as its her story and one I'm sure she would want to see when she is older. Due to complications she ended up having further surgery at 6 weeks and ended up spending a total of 7.5 weeks in the SCBU so I am so glad that we took all teh photos we did.

One last thing, you will meet parents from all walks of life in SCBU and luckily I have been able to meet up regularly with two mums who leave nearby. I am in text contact with 2 other mums - usually on mothers day, fathers day, birthdays, xmas etc or when we just want to see how our lo's are getting on. Whilst your old friends can be hugely supportive to you, with these parents you share an almost unique bond and without having to say anything they understand why you might act or say things the way you do.

Anyway, enough from me. I wish you all the luck in the world with the pregnancy and if you do find yourself in SCBU for any length of time, you will get through it. You have already shown that you are made of strong stuff. Well done on bf fro so long (we managed 10 months) and that will definitely help you with expressing for teh new one if you have to

sorry for all the typos!

ellymae what a lovely message. Thank you. And a very good tip about taking photos - I think we will need to be primed to take one instantly the baby arrives. Shall put it on my birth plan when (if) we're at that stage.

My DS was 4 days overdue born naturally but didn't feed or poo so ended up taken by ambulance to regional centre an hour and half drive away from home 3 days after he was born with bowel obstruction. Was in Neonatal Intensive Care for 3 days after blockage cleared in xray dept then taken to the Neonatal Surgical Unit at the next door children's hospital as he diagnosed with Hirschsprungs disease where there are no nerves at bottom end of bowel. He stayed in there for neary 2 weeks and ended up having surgery at 6 weeks.

Staff on both units were fantastic provided so much support in horrible situation. They provided all clothes, nappies, wipes and creams didn't need to bring anything in at all. Hospital also provided accommodation at both hospitals which was good as breast feeding and expressing at all hours and too far to go home.

It is amazing as he is now week away from 1yr old and dispite having been in theatre for 5 hours only got 2 tiny white marks on stomach and would never have imagined we went through the trauma and heartache in first few weeks.

I would just say accept as much help and support as possible.

Thanks, stressedmum. It's good to know the staff were helpful and that your DS is so well recovered now.