(This was first posted over at the Mum's and Dad's board and someone suggested I post here as well - have edited a tiny bit but not much.)

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 initially been given at home given the right preparation (such as having the right creams and something to bag him in)?

To give you a bit of background, I'm researching the possibility of having a homebirth as something I would very much like. It's not definite by any means that my son will have an ichthyotic condition but my last son (stillborn due to IUGR which we will keep an eye on this time) 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.

In the other forum, the general view is just don't risk it and I'm very much (sadly) leaning towards that too now but all stories that you can give me will really mean a lot to me and I'll take them all with me to discuss with my midwife.

Thanks very much in advance.

Cheers
Vicky

[This message has been edited by dotvicky (edited March 07, 2007).]

Well, considering it was my own birth so I may not have all the details, but I was born about a month early as a collodion baby (I have LI). My mother has never mentioned that my skin was cracked, but I did have to be placed in an incubator because my temperature kept oscillating. Also, my eyelids were too tight and so were peeled back, making me unable to close my eyes (that later fixed itself, luckily). They used some kind of antibiotic eye ointment at the time to help keep my eyes lubricated and free from infection.

Hello there,
My DS, Peter, was born Sept. 2005, 3 weeks and a day before his due date. I don't know if the early delivery is related or not...we have reason to believe that the estimated date was actually too early because I chart my cycles. He was the size of a full-term baby, but he's the size of a 2-1/2 to 3 year-old know and he's not yet 2! To give you some more background on the delivery itself, this was a hospital delivery, but no intervention except for an external fetal heart monitor. No pain meds, etc. (I didn't even have an IV) It was a 24 hour labor (unusual, because this was my 3rd child, but I'm prone to long labors) and a VBAC (vaginal birth after C-section---my 1st child was a C and the other 2 were successful V's, Yah!) Our baby had no signs of fetal distress and there were no complications.

When Peter was born, he was a collodian baby and the on-call Ped knew immediately it was Ichthyosis of some kind (lucky that, because it was a small hospital and none of the nurses had ever seen anything like it). The skin on his face was so tight that he could not close his eyes or mouth. This sorted itself out, eventually, but it looked scarey. He had constrictive bands of the membrane on his fingers and toes, so he could not bend his fingers very well. His ears were constricted so much that they were tiny and you could just barely see the ear canal. In fact they were not able to perform an ABR at the hospital to check his hearing.

The pediatrician was not overly alarmed, but called a pediatric dermatologist at the closest children's hospital for advice. Peter did not need to be in NICU, in fact he roomed in with me. He did have some trouble initially with body temp and was on a warming table for about a half hour, but after that, blankets and Mom's body heat were sufficient. The pediatrician would not let us leave the hospital, however, until he had scheduled an appointment for Peter a couple of days later with the pediatric dermatologist.

Things you need to know and be prepared for: When the membrane starts to shed, your baby will likely develop some skin fissures in areas like the wrists, ankles, knuckles, etc. These need to be treated with an antibiotic ointment 2x a day and then coated w/ aquaphor. Peter had fissures around day 3 when he saw his pediatric derm for the first time. Clothing of any kind will be uncomfortable (we had a hard time convincing the nurses of this, they so wanted to put long-sleeved onesies on him), so wrap your baby in a few thin blankets (like flannel receiving blankets). We were advised to keep his eyes lubricated with "Aqualube" which is available over the counter. This may not be an issue if your baby can close his/her eyes, but if not you need to keep the eyes moist to protect the corneas from being scratched. We were advised to coat him from head to toe with Aquaphor. The derm later said to do this at every dipe change, but that's a bit excessive. Probably 6 or so times a day, but you'll be able to tell after awhile by touching his skin. Also, I tried and tried to breastfeed Peter, but in the end he was not able to express the milk effectively because of the tightness of the skin. He had good latch and everything, but those facial muscles just couldn't do it. In fact, we had to use preemie bottle nipples for the first 2 months of his life. If you plan to breastfeed, I would highly advise some good support from someone knowledgeable in feeding preemies for that reason. And it would be a good idea to have some preemie bottle nipples on hand, since they are not readily available at retailers.

I know I'm probably forgetting something, but feel free to contact me with any questions.

Take care, and God bless!
Susan
Peter 9/25/05-LI
Mary 01/09/04
David 03/29/00

(First I want to apologize for this font! It looks really weird to me, and I can't figure out how to change it! Hopefully it will post more legibly!)

I have a son (now turning 4) and daughter (16 months) who both have LI and were collodian babies. both were sent immediately to the NICU for special care where they remained for their first 3 weeks of life. They were in humidified incubators and were kept lubricated with polysporin on cracks and eucerin or petroleum jelly on the rest of their bodies. Because of the cracking skin the staff took exra care to limit contact with the children to prevent infection. Only their immediate doctor and nurse, my husband, and I were permitted to touch them. Both my son and daughter could not close their mouths enough to latch on, so breast feeding did not start until the third week, when their faces started to loosen and gain movement. the first week they were fed through tubes in their umbilical cord. they were also on pain meds through the cord. the staff could not prick the skin or adhere medical tape to their bodies, so they used other means such as co-ban wrap and taking blood through the cord. Both my children needed oxygen for a day or so for jaundice. They also both needed lubricant for their eyes because they could not close them.

I live in arizona where the air is very dry, so perhaps that is why the humidified incubator was so important, but to be honest, I would not consider a home birth with my situation. everyone is different, but I think about how grateful I am that I was in a hospital when my son was born and began cracking immediately and was such pain. I would feel terrible if I was at home and could not provide the pain relief and care he needed immediately. To me, it is not worth the risk.

You could have an amnio test performed to determine if the baby will even have the disorder... that might eliminate your dilemma all together if the test was negative.

Best of luck!

Susie

Thanks for all your support and replies.

My son was born on 12th June and didn't have collodian membrane or any ichthyotic condition.

There was/is still something weird with my or his sulphatase levels (I think) but I'm not going to worry about it for the moment because he's fine and I won't be thinking about having another kid for a few years yet.

It's possible that the collodian membrane (if it was even that) on my other (stillborn) baby was absolutely nothing to do with LI or anything else, we won't know possibly ever.

Thanks again for all your help - I hope these posts will help other mums-to-be.

Vicky
xx