Birth Plan recommendations?

Posted by: ts1452

Birth Plan recommendations? - 05/10/11 07:13 PM

My husband and I are expecting our first child in July and my husband has EHK. We opted not to do amnio or CVS, but read a post by someone (can't remember if it was on this site) that said they did ultrasound late in the pregnancy (30+ weeks) to try to identify skin differences. We know it is likely a long shot, but we have great insurance that is covering the 3D/4D ultrasound we are having at 31 weeks, so we figured we might as well. The main reason we want to know is if it would affect the birth plan, but I haven't found much information online as to whether or not a diagnosis would affect the birth plan. Does anyone know if there is a recommendation to do c-section if you know ahead that the baby has ichthyosis? Is a regular birth more traumatic to the baby's skin?

Posted by: Hearsay

Re: Birth Plan recommendations? - 05/13/11 02:00 PM

Ok, I replied to this yesterday but the post appears to have vanished. frown Let me try to recreate it.
Posted by: Hearsay

Re: Birth Plan recommendations? - 05/15/11 12:09 AM

Short version - Our scans were inconclusive at best, but you might have better luck depending on the type of EHK that you are coping with. We had them zoom in on the scalp and measure the skin thickness and we also tried to get a good look at the soles to see if the thickness or cracking pattern had begun. Since the baby is in fluid, the skin is well hydrated and seeing anything is very difficult. The only literature I found about doing it successfully referred to harlequin infants where the skin membrane is so thick that they could see the eclabium and clenched hands. I would love to see someone have success with EHK.

As for the birth plan, all 3 of mine were premature and there was greater concern about their ability to breathe than the problems with their skin. I had 2 that had temperature regulation issues. One took 2 days to get control, the other was okay after 12 hours or so. Both were 35 weeks, 1 day.

One thing I found out is that all 3 hospitals did not carry Cetaphil, which is our preferred cream. We had to bring our own after the doctor called for it and we were brought Cetaphil cleanser, given some very watery, pretty much useless thin cream, and then some other random stuff they had. None were thick enough to manage the water loss issues.

My oldest's skin was pretty torn up after the birth, but the other two were fine. All were vaginal births. Also remember that we don't have a blistering sort of EHK.
Posted by: twinmum

Re: Birth Plan recommendations? - 05/15/11 10:58 AM

My son has (bullous) EHK (palms and soles affected) but from birth for about 2 months his soles were beautiful and soft and I assumed they were unaffected all that time - so I don't know if that helps or not but I would say (at least in our case) that ultrasound wouldn't show...
I would be really interested to hear how your scan goes if You don't mind posting again - I've been thinking of going back to my sonographer to have them re-look at my scans (twins, so I had lots of scans) retrospectively to see if they can see anything - as much for the sake of educating that industry as anything.
As far as birth plans go - I opted for vaginal but ended up with a c-section (breech twins) after 12 hours - Harry's skin was SO fragile and thin that my personal opinion would be try for vaginal BUT if it looks like you'll need vontouse suction or forceps etc then opt for the c-section at that point... just my opinion but maybe someone who vaginally delivered a bullous EHK baby may say otherwise...
Posted by: MamaH2

Re: Birth Plan recommendations? - 05/16/11 02:13 AM

My daughter was born at home, with no family history of EHK, so we didn't really have the option of c-section. She didn't have any sort of blistering from the birth itself. We noticed first blisters on her hands which the midwives thought were sucking blisters. It wasn't until we started bathing her that her skin started peeling. She also has palmoplantar EHK, but we didn't notice build up on her feet and hands for a few months. We found with Ivy that she wasn't in critical care for the most part. She didn't get dehydrated or catch any bugs from the hospital. They mainly just wanted to watch her until they got a confirmed diagnosis.

If I were you I would note in your birth plan that you know the baby might be born with EHK and that it isn't a life threatening condition. I would desire the baby to still be placed immediately on my chest for bonding and the best start to the nursing relationship. I would do everything the way I have for all my home births: delayed cord clamping/cutting, waiting for the placenta to come out on its own, performing the tests they do while the baby is on my chest, etc. I would probably be pretty adamant that there be as few people in the delivery room as possible so that the risk of infection is lowered for the baby. And as a long shot I'd probably ask that the baby remain with me unless there is an indication that the baby is suffering from dehydration or infection. I'd make a list of the dressings that I'd need for the baby, and if the hospital doesn't carry something that you know you'll need, bring it.

Good luck. I hope that your husband's mother will be able to come and help, because I'm sure he doesn't remember his infant-hood very much! It will be a trying time if your baby does have EHK but you are so much more prepared than I ever was for this crazy miracle.

And I just want to add to the previous post that if you're at the point where the doc is recommending forceps or vacuum assist, you're probably past the point of a c-section. Once the baby is in the birth canal there's no way to do a section. You can always ask to try a different position to get the baby to move down more quickly, like squatting or hands and knees. (just my 2 cents though)

Posted by: twinmum

Re: Birth Plan recommendations? - 05/27/11 11:16 AM

"And I just want to add to the previous post that if you're at the point where the doc is recommending forceps or vacuum assist, you're probably past the point of a c-section. Once the baby is in the birth canal there's no way to do a section. You can always ask to try a different position to get the baby to move down more quickly, like squatting or hands and knees. (just my 2 cents though)


Thanks Lizzy, wasn't aware of that, I'm glad you commented.
Posted by: ts1452

Re: Birth Plan recommendations? - 06/02/11 02:51 PM

Thank you so much for all of your replies.

We were able to meet with a pediatric dermatologist last week and also had our last appointment with the Maternal Fetal Medicine (high risk OB) specialist as well. The pediatric dermatologist was MUCH more helpful. Throughout the process, the MFM office was monitoring us and performing the ultrasounds. Each time we saw a different doctor and felt that it was just someone else who didn't know us or know anything about Ichthyosis/EHK. We felt like we knew more about what to do than they did. At the last appointment they said they couldn't see anything on the ultrasound so they didn't feel like they needed to monitor anymore. Granted we knew it was a long shot to see anything informative, but we were also JUST into the time period where anything could even be visible. I also doubted whether they really knew what they were looking for. In the end, we were wanting to know for preparations for birth mostly, and we weren't wild on our office visits there anyway, so whatever.

Especially since we had just come from the pediatric derm appt. It was so nice to finally talk to someone that had experience with EHK and babies, and that could provide us with information. She is coordinating with our OB and the ICU at our hospital to make sure they will have everything on hand that we could need if our baby does have EHK (we specifically talked about making sure they have Cetaphil!), as well as making sure there is information in our chart and her contact information. It is a relief to know that they will be prepared should we need it. Also, she was able to give recommendations about vaginal birth vs. c-section. In the end she said it is a trade off - there may be a little less trauma to the skin doing a cesarean, but still will be trauma, and you won't get the benefits of clearing the lungs of fluid, etc. that come along with a vaginal birth. Plus the longer recovery for mom, etc. She recommended proceeding with a vaginal birth as planned and just to be prepared for appropriate treatment/care after birth as needed.

We have 8 more weeks (if he follows the plan!) until we get to meet our little boy. We are super excited! Hope to post an update once we settle in. Thanks again for the responses and support!
Posted by: MamaH2

Re: Birth Plan recommendations? - 06/06/11 01:59 AM

Good luck! You can do this.