Lots of questions from a soonish-to-be-mum

Posted by: dotvicky

Lots of questions from a soonish-to-be-mum - 03/02/07 02:32 PM


Right - this started as a reply to the lovely Beepbeepinajeep who has given me some good tips so far on stuff but as I've burbled far more than I thought I would and I've got posts dotted all over the place, I thought I'd make it a single new post in the Mums and Dads section with all my questions together.

Bullet point history:
- I gave birth to a stillborn son (due to severe IUGR) last June at 30 weeks gestation. Postmortem suggested he was covered (or would have been covered) in a collodian membrane and had skin changes typical of ichthyotic skin problem.
- I'm now pregnant again, currently at 20 weeks with another boy.
- Neither my husband or I (or any of our families) have a history of ichthyosis although my family on my dad's side (although not my dad himself) has very dry skin and some cases of excema/psoraisis.
- So far test-wise -
* I've come up positive for low median LL-sulphatase somethingorother - indicator of x-linked.
* But estriol count is normal so we think he's clear for x-linked.
* TGM1 (for LI) and ABC-somethingorother (for HI) are being tested for at the moment on my son of last year - results by mid-March, hopefully.

As you can see, we're getting plenty of information but I don't think we're going to have any tests that would change our decision to go ahead and (hopefully) have our little boy in July. However, all the preparation I can have can only be a good thing in my book.

Apart from an amnio on this baby to also test the TGM1 and ABC-thingy (which I feel is too risky and unecessary especially as we would be unlikely to do anything different pregnancy-wise off the back of its results), I figure the only other thing we can have done now is an ultrasound. We'll be getting plenty of them anyway (probably one every 2 weeks from 28 weeks onwards) to check for any growth problems and a hunt around the boards suggest we could possibly look for signs of an ichthyotic problem while we're at it.

I've collated the following from reading other posts of things to look for (probably from 24 weeks or later) that might indicate more severe ichthyosis or a collodian membrane:
- restricted movement/balled-up hands
- lack of free-floating hairs on the scalp
- thick scalp thickness (or any other big bit of skin like the back)
- hyperlineation on the soles of the feet (what is this? extreme wrinkling?)
- sediment in the amniotic fluid

Anything else we can look for on the u/s? Any other non-invasive (to the baby - I don't mind giving blood) tests we can do?

I'm very much hoping to have a homebirth (assuming everything relating to his growth is going well and I get that far!). What are the risks associated with homebirth if the baby does have some sort of ichthyotic complaint? I'm assuming most things will be around the collodian skin problem as anything that only affects the baby after he's a few hours old will be catered for by a transfer into hospital after birth if necessary, which is fine. My hospital (with excellent facilities) is less than 10 minutes drive away in rush hour (3 minutes in the middle of the night if you're in a hurry!).

Things already mentioned include the fact that he has a risk of sepsis which would be increased at home because it is a less sterile environment. While I agree that a less sterile environment is less favourable for anything, most homebirth experts agree that a clean house (and my house is pretty darn clean) has less germs - and certainly fewer 'super germs' - than a hospital so I'm not sure if this applies. Unless she meant that he would get to have a special sterile environment (like a bubble) at hospital that he wouldn't get in a home environment, I'm not sure this one is relevant.

It was also mentioned that collodian babies can have problems breathing but my research so far of more generic breathing problems at birth suggest that all the emergency procedures that would be done in a hospital can also be done just as effectively at a homebirth and the midwife will be as, if not more, experienced with dealing with problems like that than someone in a hospital, especially when you have much more of a midwife-lottery in the hospital and could get a less well trained midwife in attendance.

I obviously want the best birth for my little one and me and the general perception in the UK is that a hospital birth is 'better' due to being lower risk etc. etc. but there's been a lot of research that contradicts this in relation to medical interventions required, length and pain levels of labour, the stress levels of the baby and the chances of successful bonding and breastfeeding after birth. It's thought that homebirth is so uncommon in the UK compared to other countries (52% in Holland, for example) due to a lack of sufficient homebirth-trained midwives in the NHS and government policy rather than because it is genuniely the better option for the 98% of mothers who have a hospital birth.

Obviously, all the recommendations are typically based on births that are initially considered 'low risk' so I guess I need to work out through this board and research if a chance of the baby being collodian/ichthyotic puts me in the high or low risk category. And again, there's a great deal of myth and mystery around that - for example, a breech birth or a VBAC is not necessarily high risk if you've got a properly trained midwife to support you - so I want to make sure that I don't automatically get put into the high-risk category by default.

Wow, this has been a long post - thank you for sticking with it if you've gotten this far and thanks again for the support I've already had from this excellent board.


Posted by: CShell

Re: Lots of questions from a soonish-to-be-mum - 03/02/07 05:39 PM

Wow, good luck to you with the homebirth! I would have loved to do one, but we're in the military and they don't allow that in base housing lol My daughter has Netherton's Syndrome, so was not born with a collodian membrane; however, she was in the NICU for about a week for poor temperature control (to this day she still has poor temp. control lol She gets too cold) and poor weight gain (also a symptom of NS). I don't know much about the risks of a collodian birth, I do know that dehydration can be a problem. I have read some encouraging things on homebirth - like there are less germs and chance of infection. Hospitals are crawling with germs - Julia (my daughter) in fact, picked up an infection when she was in the NICU, and I'm positive it was because we were in the NICU. Once we got home and were breastfeeding, she didn't have any infections until the month after she weaned.

I think the best situation would be to have your midwife do lots of research on collodian births, and perhaps have her talk with another professional who's had experience with collodian births - so you know what to expect, and what supplies to have (plenty of Aquaphor? lol). My guess is in the medical field, a collodian birth would be considered high-risk, but don't quote me on it.
Posted by: dotvicky

Re: Lots of questions from a soonish-to-be-mum - 03/05/07 07:35 PM

Nope - haven't got a clue about a name yet. Hopefully, I'll get inspired when I meet him. [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img]

Think I will do a post around parents experiences in the first few hours of their babies lives, see if that helps in understanding the special issues around collodian babies and their births.

Posted by: sarahbug

Re: Lots of questions from a soonish-to-be-mum - 03/12/07 08:01 PM

Testing: we have a daughter with ichtyosis and are expecting again this May. Our doctors told us that the biggest sign via ultrasound is the ears. They look for budding of the ears also if you are having a boy they informed me that they would be keeping an eye on the genitalia.
Posted by: dotvicky

Re: Lots of questions from a soonish-to-be-mum - 03/12/07 08:18 PM

Aha - keep an eye out in what way? That the family jewels are smaller than they should be? Similar with the ears?

My last baby had normal size genitalia and ears (I think) at 30 weeks but we will add it to the list.

Thank you.

Posted by: Angel24755

Re: Lots of questions from a soonish-to-be-mum - 03/12/07 09:41 PM

I hate to be a downer but I really feel that I should mention we had two babies that were Collodion and nothing was noticeable in the ultrasound. We had several ultrasounds with both of them due to all the complications we had with our oldest son (no collodion there.) Both of my little ones that were Collodion were born with a ton of hair. The hair was free flowing. The membrane was formed under their hair and you never would have known they had a membrane on their scalp until it started peeling. Actually, for my sons first few days of life we didn't know there was membrane on his scalp...even the nurses didn't think his scalp was affected...what did we know. And, for what it's worth, there would be no huge difference in a male infants genitalia on an ultrasound if there was a Collodion membrane. When I got pregnant with our daughter we looked for signs of Collodion. Her ears looked normal on the ultrasound but were still little rosebud ears at birth. Her hair was free flowing just like her brothers, and there was no sign of membrane. In fact, I honestly can say that I thought she was unaffected because I thought that surely something would be noticed. It is so very hard to pin point these small things on ultrasound. Honestly, unless there is a huge defect or a very very different appearance or measurement (not just off by a little), ultrasound can only do so much. The day my daughter was born we had a biophysical profile. She was expected to be almost 6 pounds. She was 4 pounds 6 oz. That's a big difference. I should also mention that we were in one of the best hospitals in the country for women and infants. Ultrasound can give you an idea of the overall well being of the baby and it is useful to diagnose some conditions but I certainly would not rely on it if your looking for Collodion. There is a huge possibility that nothing out of the ordinary would be noticed.

When I was pregnant with my very first son I had a million and one things on a list that I wanted to go a certain way. Looking back at it, I can honestly say that some of the things were ridiculous and that many of them were selfish. (Not implying in any way that anything you feel is selfish...only speaking about my experience.) Bottom line, the most important thing in the end is that mom and baby are healthy. I had three NICU babies and all three had their own complications. I considered a homebirth for my first child. My husband talked me out of it as he felt it would be better for us to at least have our first child in the hospital in case something went wrong. It's a good thing too. Without that hospital my son would be dead. His cord was less than a foot long, he never could have been born naturally. He never would have survived labor. He had IUGR that went completely undetected and was in terrible shape when he was born. He was not breathing and was put on a vent. for days.

My suggestion to you would be to talk to your hospital, find out if there is a birthing center that would give you something similar to a home birth but without the risk. Perhaps arrange to labor at home with a midwife of your choice and make plans to leave for the hospital towards the end for delivery (you have mentioned the hospital is very close which is why I suggested that.) There are a lot of options out there that would ensure the safety of your baby and while still giving you something close to what you want. You are already a high risk pregnancy due to your previous history with IUGR. The possibility of a Collodion baby only adds to the complications. Unfortunately, not everyone is a good candidate for a homebirth...that's just the way it is. Speaking as a person who has had both IUGR babies and Collodion babies, I personally wouldn't take the risk of a homebirth. But, that's just me.
Best of Luck!
Posted by: dotvicky

Re: Lots of questions from a soonish-to-be-mum - 03/12/07 09:50 PM

Hey Lisa,

I do appreciate you taking the time to type in your reply and yes, I'm kinda coming to the conclusion myself that a hospital birth really is best but I'm glad I've made the effort to come to it on my own terms and you guys have helped with that.

>>>My suggestion to you would be to talk to your hospital, find out if there is a birthing center that would give you something similar to a home birth but without the risk.<<<

It's a good suggestion but for me, the things I would get in a birthing centre would be a bad compromise - not the medical support of a full-blown hospital with a NICU but also not the comfort and ease of my own home.

>>>Perhaps arrange to labor at home with a midwife of your choice and make plans to leave for the hospital towards the end for delivery.<<<

Yes, this is what I'm going to work on now with my local midwife. I'm sure there are also ways that I can make the hospital birth as pleasant as possible while just being down the corridor from the NICU in case we need it.

Thanks again. (And for the tips on the ultrasound - I will obviously still look but, no, I don't know if I'd ever be comfortable using it as a diagnostic tool.)


[This message has been edited by dotvicky (edited March 12, 2007).]
Posted by: sarahbug

Re: Lots of questions from a soonish-to-be-mum - 03/12/07 09:50 PM

Yes both jewels and ears smaller and less distiguished. Although our daughter was perfectly normal according to ultrasound.
Posted by: Angel24755

Re: Lots of questions from a soonish-to-be-mum - 03/13/07 12:46 AM

I feel for you, I really do. I remember how sad I was when my first son was born. I was so hoping for a natural birth, no drugs, and a healthy baby. I ended up with an emergency c-section, no labor what so ever, and a baby who was not expected to live. I was not able to breastfeed due to a lack of milk. Everything I expected to happen, didn't. I felt so cheated...like I missed out on something. Of course when I saw my son so terribly sick and not expected to survive, my sadness of not getting the perfect labor and delivery flew out the window. I didn't care anymore. All I wanted was my baby to be okay. When we finally brought him home from the hospital and I knew he was finally healthy, I went back to feeling cheated. Cheated that my delivery was the exact opposite of what I was hoping for and cheated that my baby had to spend time in the NICU when I was expecting a healthy baby up until the moment he was born. Thank goodness he is a perfectly healthy 6 year old now and all that matters to me is my children...not how their delivery went or what did or didn't happen. I can honestly say that I no longer feel cheated. I have three beautiful children that mean more to me than life itself. Often times what we think are important at the moment are often not important in the big picture. I get the feeling that even though the homebirth obviously means something to you, you will be just as happy in the end with a healthy baby regardless of where he was born.
Again, Best of Luck!!
(Btw...when I mentioned the birth center, I actually meant a birth center within the hospital. Many hospitals have birth centers that will allow you to have the midwife of your choice, have the least amount of intervention as possible, and some even have rooms for water birth. I don't know if you've spoken to anyone from your hospital just to find out exactly what they have to offer but anything's worth a try!)
Posted by: dotvicky

Re: Lots of questions from a soonish-to-be-mum - 03/13/07 07:01 AM

I will talk to the hospital about the birth centre. For me, it's not so much the room or even the people involved but the level of intervention that bothers me.

I had a friend who had a terrible hospital experience that, despite having a perfectly healthy baby scarred her so much, that despite wanting more children she was so scared, it almost didn't happen. Her second birth was a homebirth and healed her despite it being a stillbirth (not due to being a homebirth).

I don't have *that* big an issue with hospitals and my last experience (while being horribly sad) was actually fine. I guess I just need to prepare as much as possible and make sure that I have a super clear birth plan.

I will also labour at home for a while as well because everything I've read says that the longer you are at home, the less chance of interventions.

But yes, at the end of the day, as much as I would hate the idea of a c-section or even an epidural, what I want most of all is my little boy in my world with me. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]