[2boyzmama]

I have two boys, one that was born with the typical western "cascade of interventions" birth that really opened my eyes to understand childbirth. I learned a lot, and my second son was born in a hospital (just barely!) and with a beautiful natural birth. I'd love to have a homebirth, and am working with a wodnerful home birth lay mid wife.

HOWEVER...

My second son is special needs with a genetic syndrome. He had serious medical issues that required immediate intervention at birth, and has had continued issues with his health. And he's rather minorly effected in some ways (for example, does not have a serious cardiac defect, which is very common in his syndrome). My husband and I have both been tested, and neither of us tested positive, however the test is estimated to be approx 85% effective, so there's still a chance that one of us is positive. It's also possible that one of us carries an unknown gene mutation that leads to this syndrome. Because of that, our chance of having another effected baby has been estimated at 1-2%, which is rather low, but much higher than the general population occurence of 1:2000-4000.

SO...I want a home birth, but I'm very fearful that my child will be effected by the syndrome, and without immediate medical intervention, there could be serious complications. My home birth midwife is a practicing licensed paramedic, there is a fire dept less than 2 miles away, and a well-known children's hospital within 15 minutes. But still...

So, my options are to instead birth at a birthing center near us that has a very good reputation for natural births, or to homebirth anyway, knowing my risk is still low. I've already talked to my OB and my son's geneticist so we are prepared for my 20 week ultrasound to look specifically for soft markers of the syndrome, however none were noted on my son's ultrasound (we also didn't know to look for anything though). I think I'll feel more confident in making a decision after my 20 week ultrasound, we'll either see soft markers or we won't. If we do, I won't risk a home birth. If we don't, I will probably lean more towards it.

Thoughts? I refused all genetic prenatal testing, so no help there. All I have is the ultrasound.

 

[pjs]

If it were me, I think I would opt for the birth center. I wouldn't want to need those interventions and have to wait for them. JMO.

 

[Jilian]

I think it depends on what kind of immediate medical attention the baby will need if he/she has this same syndrome. Is your midwife equipped to perform this intervention if needed?

My situation is somewhat similar to yours. DS2 appeared to be healthy throughout pregnancy and the 20 week u/s so I had a homebirth with a MW. He went dusky at birth after his cord was cut but then was fine for the next 2 weeks. At 14 days old things went downhill and we were surprised to learn that he had a rare congenital heart defect that needed an emergency quadruple bypass. Luckily everything worked out perfectly and he's doing awesome almost 2 years later. Now I'm preg with baby #3 and facing the same decisions.

I opted for the quad screen and it came back with a negative result. We just had our anatomy scan and the heart looks just perfect, they've completely ruled out DS2's CHD. We are scheduled for a fetal echo next week. The 2 ultrasounds were performed by a perinatologist and we had a consult about chances of it happening again (we have a 3% chance). So we're either giving birth at home or at the birth center. I feel confident that if this baby does have a CHD we will be ok. The MW has oxygen to sustain the baby if needed while the ambulance arrives. She has herbs to assist with breathing and other meds for emergencies. Knowing that we can handle a worst-case scenario makes me feel quite a bit better. I also know that if we were to give birth at the hospital I would likely be pressured into an unnecessary cesarean if the slightest thing were to come up. Our hospital is intervention-happy and more interested in liability than anything else.

 

[cristeen]

I think ultimately it comes down to your own comfort level.

For us, our first son had a CHD that was diagnosed at the 20 week u/s, so we birthed in the hospital, even though we had been planning a UC. With this bean, again my plan is a UC. We have an approx 2% chance of another CHD, and an even smaller chance of the *same* CHD. If a CHD is caught by the level 2 u/s @ 20 wks, then we will reevaluate birth plans then, based on what the defect is and what the treatment is. But if the u/s does not show another CHD (or it shows one that doesn't need immediate treatment), then I'm going to do my best to have my UC.

 

[dogmom327]

How immediate is immediate? Does there need to be a NICU team in the room when you deliver or was it a matter of the doctor looking at the baby, realizing help was needed and arranging for it...in other words, do you have 30 minutes if you need it to get to the hospital? If you have the time, I'd opt for the HB personally.

 

[acemama]

I've been thinking about this post. I know which birth center you will be using and they wouldn't "allow" you to birth there if they felt you or your baby is at risk for any sort of defects. They are so strict there and you have to be a "perfect" pregnant mom to birth there. (which drives me crazy

)So, if they are OK with you birthing there than really you should be OK for a home birth. Moms who are able to birth at the center are moms who would easily qualify for a home birth. (the center seems to be more picky than home birth midwives) This is really me just thinking out loud, but know the birth center won't "accept" you if there is a suspected issue with the baby. They would require you to birth in the standard l&d unit. I hope you get your answers soon.

ETA: I don't know if this is coming out right. I'm just offering a different perspective.

 

[2boyzmama]

The interventions he needed at birth were with breathing and swallowing. He was very blue/purple, and did not pink up, even though we delayed cutting the cord and he was on my chest immediately. So they cut the cord and took him to the back of the room where they had to repeatedly deep suction him (thread a long flexible tube into his lungs to suction) and place him on CPAP. His breathing was very erratic...too slow, too fast, episodes of apnea.. He also was unable to swallow, so kept aspirating his own secretions, let alone trying to feed him. In those first few days he was deep suctioned numerous times because he'd start choking, turn blue, etc. We quickly learned to keep him off his back, which helped him handle his secretions.

SO...could he have survived a home birth? Probably. We could have done mouth to mouth on him and called 911 where they woudl have had oxygen.

The problem is homebirth midwives are not legal where I live, so I would have a lay midwife. Which means no lifesaving equipment. No oxygen, only a bulb suction.

AND...most children with his syndrome (87%) have a congenital heart defect that could either be extremely emergent, or could wait a while before being treated. That would likely show up on ultrasound, which is why I've been very specific talking to my OB about what we need to look for on my ultrasound. There's also a high risk of kidney malformations, but that would probably not be emergent.

If the ultrasound shows soft markers of the syndrome (palate issues, certain facial features that may be noticeable, cardiac issues, kidney issues) then I will most certainly birth at the main hospital and have NICU team on standby just to cover our bases. But I'll write a very VERY careful birth plan that says they are not to touch the baby unless there actually is a problem, and I have no doubt that my husband and I would be able to stick to our guns about that. If there are no soft markers, then the decision is between home birth or birth center.

acemama...I also was worried about risking out of the birth center, but I spoke to the nurse about it at length at my intake appt, and she said that barring any complications found on the ultrasound, I woudln't risk out just because of Connor. I have my next appt, this time with one of the OBs, in less than a week, so I'll be sure to ask again. If I risk out of the birth center, then my midwife's house is literally across the street from the hospital, so I may just labor at her house!!!

Thanks...this is all helping me sort through mroe and make sure i'm considering every angle...

Here's hoping for a healthy ultrasound next month!!!!

 

[acemama]

Quote:

Originally Posted by 2boyzmama SO...could he have survived a home birth? Probably. We could have done mouth to mouth on him and called 911 where they woudl have had oxygen. The problem is homebirth midwives are not legal where I live, so I would have a lay midwife. Which means no lifesaving equipment. No oxygen, only a bulb suction. !!!!

We are in the same area and I'm planning a home birth. I am not sure what MW you are thinking about but mine carries lifesaving equipment: oxygen, ambu bag, (not sure about delee suction), Pit and Cytotec. I believe the other MW we were going to interview carries all of the above also.

 

[alegna]

Hmm, I was going to say homebirth, no question, until I got to the no oxygen part... hmmm. How comfortable is your midwife with resuscitation? Is there another way to get O2? How fast do you think you could transport? Could you call ahead to have a team waiting if needed?

good luck!

-Angela

 

[JamieCatheryn]

Are you sure the MW wouldn't have o2? Mine carries it and they're unlicensed here too. They used it at a friend's birth, very very fast birth and the baby girl needed a little help coming around. Check with your potential HB MW and see. Being well prepared in case baby does need help could make it much safer and reassure you.

 

[Talula Fairie]

I probably wouldn't go with a midwife who didn't have access to O2. I definitely think that's significant in your case.

 

[Jilian]

Quote:

Originally Posted by Talula Fairie I probably wouldn't go with a midwife who didn't have access to O2. I definitely think that's significant in your case.

I agree, no oxygen would be a deal breaker for me. And u/s is not 100% at catching things unfortunately. DS2's CHD was missed on our 20 week level 2 u/s.

 

[2+twins]

Based on the info you've given here, I would stick to the hospital.

 

[2boyzmama]

Well...to further confuse things...I contacted the leading expert in my son's syndrome (the man who "discovered" the syndrome in the 1970s) to ask him about what prenatal markers we should be looking for. When I explained our situation to him, he said that he doesn't understand why I was told a 1-2% chance risk of recurrence, he said that if hubby and I were both negative, then our chances of recurrence are no greater than the general population, which would lead me to believe that homebirth is absolutely safe.

Now I don't know what to believe, frankly. I then called my son's local geneticist who originally told us 1-2% and left a message asking why there's a difference in what I'm being told. We'll see what they say.

And about the local midwife not carrying O2, probably not a discussion for a public message board, but she for sure does not, and will not.

 

[fruitfulmomma]

Quote:

The problem is homebirth midwives are not legal where I live, so I would have a lay midwife. Which means no lifesaving equipment. No oxygen, only a bulb suction.

IMO, if there was a probability of it happening again and your midwife can not carry oxygen, I would be going the hospital route.

My 3rd baby was born in the hospital because a late ultrasound showed the possibility of birth defects. Labor was started by AROM at close to 44 weeks (hence the need for the ultrasound) and I would have been comfortable with my midwife doing arom at home if it were not those readings so we opted to stay there with a pediatric team at the delivery. She did need some help breathing and was in NICU for several hours, but thankfully okay otherwise. But I have absolutely no regrets about my choice.

 

[Guinevere]

Quote:

Originally Posted by 2boyzmama Well...to further confuse things...I contacted the leading expert in my son's syndrome (the man who "discovered" the syndrome in the 1970s) to ask him about what prenatal markers we should be looking for. When I explained our situation to him, he said that he doesn't understand why I was told a 1-2% chance risk of recurrence, he said that if hubby and I were both negative, then our chances of recurrence are no greater than the general population, which would lead me to believe that homebirth is absolutely safe. Now I don't know what to believe, frankly. I then called my son's local geneticist who originally told us 1-2% and left a message asking why there's a difference in what I'm being told. We'll see what they say. And about the local midwife not carrying O2, probably not a discussion for a public message board, but she for sure does not, and will not.

What is most likely to occur is that this baby will be born perfectly healthy.

However, I completely understand your concerns -- my odds of having another baby with Down Syndrome are about the same odds of you having another baby with PRS. I am planning a HB with this baby, barring any obvious heart defects that show up at my 20w u/s. But my MW carries O2 and everything else that might be needed, which makes a BIG difference in my comfort level, to be honest.

Is searching out a different HBMW who does carry O2 an option? Do you have others to choose from?

Guin

 

[TzippityDoulah]

one thign I would consider it that most 911/EMT don't have newborn recussitation masks/equipment. newborns are different than infants and children... and some EMTs aren't routinely trained ot know the difference. might be better if yu do a homebirth to get newborn CPR certified yourself just to be sure.

otherwise I can see both sides of the coin. you don't want a sick baby at home who may need immediate treatment, and you don't want a baby who doesn't need treatment exposed to the problems a hospital birth can create. I totally get that! Im not sure what to say though... I'm not sure what I would do. but I would be making sure if I had a homebirth that I have a newborn CPR class, and any other thing else I might need. (though not oxygen b/c you really need to be trained in using that as it can easy kill a baby if used wrong)

 

[Jilian]

About calculating risks: Personally I feel like a lot of risk calculating is complete BS - especially when there is no known cause for the issues they care calculating the risk for. DS2's CHD has no known cause, they say it is a freak occurance yet they give me a 3% chance of it happening again (versus the average person's 1.5% chance). I know that if they find a genetic component they can assess a 25% risk but if they don't how do they truly know the risk?

Personally giving birth with a MW who does not carry oxygen is not something I would ever feel comfortable with and that is not just because of DS2's issues, I would feel the same even if all my babies were born healthy. Some babies just need oxygen to start up and lack of oxygen can lead to brain damage. Is there another MW who does carry oxygen? Can you get oxygen for the MW to use?

 

[honeybee]

I'm a bit confused. Are you talking about a freestanding birth center, or a birth center attached to a hospital? Birth Centers I know of don't have any more equipment than a mw brings to a homebirth, so unless the b/c just puts you closer to the hospital timewise, I'm not sure there's any advantage over hb.

I can totally understand wanting to be at a hospital in your situation. It's a tough call, and in the end you're the only one who can decide what the relative risks are.

Best wishes in making the right decision for you.

 

[2boyzmama]

Quote:

Originally Posted by honeybee I'm a bit confused. Are you talking about a freestanding birth center, or a birth center attached to a hospital? Birth Centers I know of don't have any more equipment than a mw brings to a homebirth, so unless the b/c just puts you closer to the hospital timewise, I'm not sure there's any advantage over hb. I can totally understand wanting to be at a hospital in your situation. It's a tough call, and in the end you're the only one who can decide what the relative risks are. Best wishes in making the right decision for you.

It's a birth center attached to a hospital...and the hospital is the regional NICU even.

I have my next OB appt Monday, so I can ask more questions and get more info. I'm also still waiting for a response from my son's geneticist so I can better understand the 1-2% he gave me. And we'll schedule my ultrasound, so I'll know when that is. Oh yeah...someone recommended a particular US tech, so I need to remember to request that person.