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#13607 - 03/05/07 08:00 PM The first few hours of your collodian baby's life.
dotvicky Offline
Member

Registered: 02/09/07
Posts: 25
Hiya,

I was wondering if you mums and dads could take a moment to tell me about the first few hours of your collidian baby's life in terms of what specialist care and treatment he or she received. For example, did he or she need special ventilation/breathing help? Did they need to be taken to the NICU? Could the treatment they required have been given at home given the right preparation (such as having the right creams and a room at the right temperature)?

To give you a bit of background, I'm researching the possibility of having a homebirth. It's not definite by any means that my son will have an ichthyotic condition but my last son (stillborn due to IUGR) did seem to show collodian skin problems so I want to make sure I'm armed with as many stories from you guys as possible to help me make a decision.

Thanks very much in advance.

Cheers
Vicky

[This message has been edited by dotvicky (edited March 05, 2007).]

[This message has been edited by dotvicky (edited March 05, 2007).]

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#13608 - 03/05/07 08:59 PM Re: The first few hours of your collodian baby's life.
NESSAS MOMMY Offline
Member

Registered: 11/22/06
Posts: 27
Loc: NY
I dont want to seem out of place in any way, I think though if there is any chance the baby may be affected , its best to be in the hospital without a doubt. My daughter needed immediate care. She had collodian membrane. they wrapped her in plastic wrap right away to block any kind of infection. I only saw her for a min before they shipped her to another hospital with a great NICU. But they def had her in an incubater right away and some babies need feeding tubes. I wasnt with her for three days but I do know from my husband there was noway of caring for her the way the hospital did. They really do need special care. good luck with your decision and Im sure youll get alot of helpful responses

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#13609 - 03/06/07 05:34 AM Re: The first few hours of your collodian baby's life.
atwoodclan Offline
Member

Registered: 09/11/06
Posts: 19
Loc: TX USA
If you have a risk of a collodian membrane, I would not personally do a homebirth especially if you have any problems with delivery like needing a c-section, etc. Based on your history, you are a high-risk pregnancy.
Can you maybe have a midwife with the doctors waiting nearby?
I had a team of at least ten hospital staff when Alex was born. He was a c-section due to being frank breech. Didn't know he had the collidan membrane till birth.
He was given oxygen and weaned before being transferred to the NICU. Collidian babies need to be kept in the huimidifer isolette as they can't regulate their temperatures very well. The membrane shedding puts them at risk for sepsis because a crack or something that might go unnoticed.
Alex was able to breastfeed after a day & a half. He was starving.
His apgar scores were 9 and 9( and he was born at 35 weeks & 3 days(all mine were early).
He was kept in a plastic bag that is used for colitis when he was out of the isolette.
He was in the NICU for 12 days. He had to graduate from the humidity isolette to a lesser one and then finally open crib.

I personally would not risk a home birth not with your OB history and possibility of a collodian baby. Maybe you instead can have a low-key natural birth plan at the hospital.
Just my 2 cents, but I have ahd five high-risk pregnancies. Only Alex who is 6 mos has CIE, but one had the cord around his neck twice at delivery and another one came out with an infection due to a staph infection I had.

Michelle



[This message has been edited by atwoodclan (edited March 06, 2007).]

[This message has been edited by atwoodclan (edited March 06, 2007).]

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#13610 - 03/06/07 02:54 PM Re: The first few hours of your collodian baby's life.
dotvicky Offline
Member

Registered: 02/09/07
Posts: 25
Hey Erin,

Thanks for your reply and thank you to everyone else who's taken the time to reply so far, I really appreciate it.

I had a chat with my midwife and while she's very supportive of me and my wish for a homebirth in general, she confessed that she didn't know much about the collodian skin condition and how it affects a birth at the moment - hence me (and no doubt her) doing some research. I'm pretty sure there aren't any wider medical studies out there that have been done (anyone know of any?) so your anecdotal stories are what I have to go on to help me make a decision.

I very much want a homebirth partly for myself but also for the wellbeing of my baby. Of course, I absolutely do *not* want to put my baby at any unnecessary risk and my thinking is that what you've said so far, a hospital birth will really be my only option which makes me very sad.

I have a few things in my favour; we're still trying to work out the chance that this baby will even be affected as the last baby's postmortem may turn out to have been a little hasty in its judgement - only time and tests that are currently being carried out will help. We'll also be getting plenty of ultrasounds on this one and we can keep an eye out for any tell-tale signs that suggest a collodian membrane. I also only live 5-10 minutes drive maximum from the best NICU in the whole of the South West UK (I believe) which may count for something.

While my last baby was stillborn, it was due to severe IUGR (the placenta wasn't working properly, he didn't get the nutrients he needed, got very very small for dates and died in utero) so if that doesn't happen this time - and we can test for it easily with ultrasounds - that alone shouldn't preclude me from a home birth. Also, and I know it isn't necessarily indicative of future labours, the labour was very easy.

As I say though, the responses so far suggest that I will have to give up my dream and just hope that I can find a way to make a hospital birth as pleasant as possible.

Please, please still keep responses coming, it really means a lot to me.

(Ed: Re-reading (over and over - heheh!) your responses, I'm at least a little heartened to find out that several of you had your little ones transferred to a NICU often in another hospital and they were fine. My home is probably nearer to my NICU than some of your birthing hospitals were to your NICUs. Still thinking that that's not really a good enough justification though - heheh - poo!)

Cheers
Vicky
xxx

[This message has been edited by dotvicky (edited March 06, 2007).]

[This message has been edited by dotvicky (edited March 06, 2007).]

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#13611 - 03/06/07 06:10 PM Re: The first few hours of your collodian baby's life.
graciesmom Offline
Member

Registered: 02/10/06
Posts: 155
Loc: orange park, florida,usa
I agree with all the other moms. Gracie was born with collodian membrane and was immediately taken to the NICU where she stayed for a month. I delivered by c-section (breach) at a wonderful hospital that had a NICU within the hospital. I think the biggest issue is infection. A small baby with compromised skin (deep cracks due to the tight collodian skin) is at extremely high risk for infection. My little one had oozing cracks all over her body and developed a blood infection (sepsis) which was very scary to say the least. Even though she was in the NICU she still was suseptable to infection. I know your house is much cleaner than a hospital but I would be worried none-the-less especially being transported from your home to the hospital and all the people touching your baby during the process. I personally think the baby going straight from the delivery room to the NICU is the best bet. Also, It's important for the baby to be put in an issolet with a humidifier to help regulate it's temperture. With a collodian baby dehydration is a huge factor because of water loss from the skin so that would need to be monitored right after birth as well. I don't want to scare you, I understand where you are coming from. I know that you will make the best decision for you and your family. If you have any other questions, feel free to email me. Best of luck, Jennifer

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#13612 - 03/07/07 07:05 AM Re: The first few hours of your collodian baby's life.
dotvicky Offline
Member

Registered: 02/09/07
Posts: 25
Thanks, have done so.

If nothing else, this is giving me a whole list of stuff to make sure is ready (almost definitely at the hospital now - sigh) for when he's born.

The sad thing is the chances of him having it are still very far from 100% but I just don't want to play the risk game unless I can get the odds better than they are at the moment.

My mindset has changed to trying to find a way to make a hospital birth as positive as possible - harder to do for me than with a homebirth but certainly not impossible.

Cheers
Vicky
xxx

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#13613 - 03/12/07 07:55 PM Re: The first few hours of your collodian baby's life.
sarahbug Offline
Member

Registered: 03/12/07
Posts: 54
Loc: Toledo,Ohio,USA
Hi our daughter was originally diagnosed with harlequin ichythosis. She was born with a collodian membrane. She was transfered to a hospital with a NICU two hours after birth while I was forced to stay the night at the other hospital. At the NICU she recieved respitory help, antibiotics(to ward off infection), humidified and temperature controlled environment in a incubator,blood pressure and heart monitoring and IV proteins(because of the membrane she was not able to eat on her own). I am not by any means trying to scare you but I think that the first 48hrs. from our experience, it was very important to have her in a hospital environment. Hope this helps a little.
Sarah

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#13614 - 03/12/07 08:13 PM Re: The first few hours of your collodian baby's life.
dotvicky Offline
Member

Registered: 02/09/07
Posts: 25
Hey Sarah,

Thanks for your thoughts and yes, I'm assuming that he would have to be in a hospital very soon after birth. I guess I was wondering if he needed to be there within minutes of being born.

Mind you, if the transfer is that traumatic, I have to question my motives for wanting a homebirth so badly... we'll see.

(Mind you, the diagnosis of any form of ichthyosis is far from certain anyway - all so much to decide.)

Thanks for replying.

Cheers
Vicky

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#13615 - 03/13/07 07:17 AM Re: The first few hours of your collodian baby's life.
haley's mom Offline
Member

Registered: 03/13/07
Posts: 6
Loc: saskatchewan, canada
hi there, my baby was just born this jan. with the collodion membrane. she was taken immediatly to the nicu where she was for 19n days. she was placed in an isolette that was set at 70% humidity. for the first 5 days we were not able to touch her or hold her an then after that we had to be in a cape and wearing gloves.I was not able to breast feed her as her fluid intake was being monitored and and as well as for infection purposes.I pumped and then we bottle fed her. She was also placed on antibotics immediatly, give eye meds, and eye lube, and then rubbed down with vaseline every 3 hrs. her skin bagan to peel right away but she is now on her 3rd full body peel. at first the were bad cracks and they looked really raw in places but now it isnt as bad. I think that is why they worry so much about infection at first. as far as i know she needed the nicu and there was no other place for her in the beginning, she is only the 4th baby in the last 20 years to have this condition here so I am very happy to have had doctors that knew how to take care of her. This site will help you alot, as I have already learned so much. she is 9 weeks old now and she is still peeling and her ich has still not been determined, and the derms here arent much help, I get most of my help from reading here. good luck and I hope this will help with your decision, but I know that from my experience, the nicu is the best place for our little babies.

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#13616 - 03/13/07 07:37 AM Re: The first few hours of your collodian baby's life.
dotvicky Offline
Member

Registered: 02/09/07
Posts: 25
Thanks for that. It's reassuring to read that even though you couldn't breastfeed you can still express and give her your breastmilk that way.

I obviously very much want to breastfeed but I'm glad that even if he ends up on the NICU (which seems very likely if he has collodian membrane) that I can still give him my breastmilk.

Vicky
xxx

[This message has been edited by dotvicky (edited March 13, 2007).]

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