30 weeks Intrahepatic Cholestasis Fetal Heart Arrhythmia

I am 30 weeks and baby girl has a fetal heart arrhythmia.Was told it would regulate by 28 weeks but it has not.Live in small town and Dr.s seem to know nothing and have not been sent back to specialists since diagnoses at 17 weeks.No NST or extra monitoring as specialist requested.Is this normal?Her heart will stop and slowly start back,stay slow,go high just all over.The stopping and starting is so scary.Why if she was to regulate at 28 weeks has she not and is this dangerous?Any info I appreciate!
Also just yesterday was diagnosed with Itrahepatic Cholestasis and my Dr. has no idea muchabout it.I did from my sister having it and MADE them test me! I was the one who told them what test.! Dr. said it is nothing it is benign not to worry but my sister had a stillbirth due to it she was monitored weekly blood tests, u/s but my Dr. said nothing else needs to be done no more blood to be drawn nothing! I researched online and there is not 1 site or research that say it is benign everything says this is where the biggest mistakes on Dr.s part come in that it is serious that all babies need to be delivered by 36 weeks, moms put on medicine, and crucial fetal monitoring is needed.My Dr. is not willing to listen or read the info I brought to him and I am scared! I have seen first hand what this can do and I do not want the same fate to happen to me.Can't go to another OB this is the only one in my town. Between her heart and this I am so scared for her.Seems to be lot of stress and not good.Please any help or advice I NEED right now!!! Do not know what to do.SCARED!!!
Thanks

[Confused8]

It sounds like you need to find another doctor ASAP who is more knowledgable about this.  Even if you have to travel to a nearby city, you need to do something especially with how uncomfortable you feel with your current doctor.  Where do you live?  Is there a major university near you that would have a medical center?

[cassidy2]

I'm with confused8. Find yourself an academic medical center - or at least a larger institution - and go get a visit.  There the MDs are trained for these more complex issue. Look in your area for a Maternal Fetal Medicine (MFM) physician, also called a perinatologist, and get an appointment ASAP.  An MFM could not only help you with your problem, but help refer you to a pediatric cardiologist who does fetal echos and can help you address your baby's arrhythmia, if only to help answer some questions.

[NEYLIA]

YOU NEED TO STOP FOR A MOMENT AND THINK BIGGER THAN YOUR TOWN!...YOU MAY HAVE TO TRAVEL BUT YOUR HEALTH AND YOU BABYS HEALTH IS WELL WORTH IT....YOU DONT HAVE MUCH TIME EITHER YOU 30 WEEKS ALREADY...GET GOING...DONT PROCRASTINATE...YOU DONT WANT TO END UP IN A COULDA SHOULDA WOULDA SITUATION! DONT MEAN TO SCARE YOU BUT YOU NEED A LITTLE FIRE! GOOD LUCK KEEP US POSTED!

[waterskigirl]

I agree with Neylia, your baby is worth the travel.  FInd the closest teaching hospital, university,or go live with a relative in a town with better hospitals!  You have to atleast make the attempt to give your baby a chance!!!!!

Good Luck!!!

[Christie2004]

This is a very high risk condition.  If your doctor is not addressing your concerns, you need to find one who will.  The other suggestions of a large academic center/hospital is the best one.

The "starting and stopping" of the fetal heart could simply be an arrythmia, or irrgularity of the fetal heart.  Not all are bad...but it will take some investigation to figure out what is going on.  This in combination with intrahepatic cholestasis is very worrisome, though.  

Get to another doctor right away.

[Jaysienna Laelyne]

YOU NEED TO GET A SECOND OPINION ASAP! YOU WILL NEED A VERY SPECIAL DELIVERY TEAM AT BIRTH TO MAKE SURE THAT HER HEART IS DOING GOOD AT BIRTH. YOU MIGHT WANT TO LOOK INTO TRAVELING TO THE RENOWNED HOSPITAL WE HAVE HERE IN CHICAGO, ILLINOIS. IT IS CHILDREN'S MEMORIAL HOSPITAL, THEY ARE WONDERFUL. BEST DOCTORS IN THE US! THE CAN DIAGNOSE AND TREAT BEFORE AND AFTER BIRTH. I WILL GIVE YOU THE NUMBER IF YIOU WANT IT.


SIENNA

[cassidy2]

Children's is a great hospital and will help your child POST-delivery butyou need to check out the other hospitals for the high-risk obstetric care that YOU need NOW.

[ipray4bb]

Thank you all.I looked all day , made calls to outside my town Dr.s. When telling why I needed an appointment upon mentioning the arrhythmia AND Cholestasis they would not take me.Said I was too far along with too serious complications I was best to stay where I am at! ARE THEY SERIOUS??? I would travel to the ends of the earth to get to a GOOD dr. I live in NC , western part, nothing but country and the closest city is several hours drive- I will drive it but getting to see a Dr. or at least a Dr. who has even heard of Cholestasis is my problem.It is so rare no one can help me.There has to be a dr. out there some place who knows of both  problems, baby girls heart AND my Cholestasis!! I will not give up!I am so scared and worried right now it is all I am thinking about.You know what gets me is I HAD TO BEG AND PERSIST on the test to check for Colestasis and they finally after getting upset with me agreed.If I had not made such a fuss I would go undiagnosed.It has been this way my whole pregnancy I had to fight for them to listen when I said her heart was not right and finally after 3 weeks listened and found it! Now I have to keep pushing!!It is a mothers drive to do all I can to find a way to have the best care possible for her.Just keep hitting dead ends,Dr.s who nothing of the condition or are not familiar with either condition-such as where I have been going now, refuse to take me as a new patient being I am 30 weeks with 2 problems.I am so scared! I am trying to find another Dr. I know the the cholestasis is severe and her heart could potentially be so finding a new Dr. as soon as possible is my only thought right now.I have researched online and am not finding any other places to call.Any suggestions on how to find Dr.s for my area?I have searched and searched and called and asked and 411ed for numbers and phone booked and asked other Dr.s. and am running out of Dr.s Some one has to have delt with Cholestasis they just have to had!!I refuse to go back to my regular Dr. it was a mistake to keep going there as long as I did! It has been like this since the beginning! All I want is to be taken care of and baby girl looked after like she should be and her to be okay.Never thought Dr.s could be so thoughtless and careless as my office.This is a life we are dealing with and they act as if it is nothing! Thanks again for all the advice I am trying to get to another Dr. I am worrying myself sick!
Shannon

[amanda1983]

all i can say is definatly go to another doctor asap your baby will be worth the traveling belive me best of luck

[Christie2004]

Shannon!
I am from western NC.  Whereabouts are you?  Close to Charlotte, or Asheville?

I worked at the main hosp in Asheville.  I KNOW they will take you.  If they tell you no--I am personal friends with one of the best perinatologists there.  I will get you in.

email me ***@****

[Christie2004]

Shannon,
You can also simply call a new OB group and make an appt--just tell them that you are moving or changing doctors or something, but be firm.  You don't have to mention the IHC, but do be sure you are going to a high risk doctor, not just a garden variety OB.  Usually such doctors are found at a hospital associated with an OB residency program.  If they tell you that you shouldn't change, be firm and tell them that you want a new patient appt. regardless.  Don't take no for an answer-you have the right to go to a doctor of your choosing no matter how far you are along.  We have patients who switch at 40 weeks!

Bring copies of all your records, too.  You can get copies today by calling your current OB, and telling (NOT ASKING) them that you will be by at 4pm to pick up your records.  You may have to pay a small fee, and they don't have to know why you want them. If they ask, simply tell them nicely "I just want to keep them with me".  

If you are anywhere near Asheville, again--please email me and I'll get you in to MAHEC at Mission Hosp.

[waterskigirl]

If you are in NC,  I would drive to DUKE hospital in Raleigh and not go home until somebody does a full work up on your baby!  They are a great teaching hospital!

[waterskigirl]

I know it is a long way, but it is an alternative.  They also have a children's center there.  I just hope she finds one that will take her!

[Christie2004]

She's in western nc, hundreds of miles from Duke.

[ipray4bb]

christie2004
I emailed you and hoping for a reply.So far nothing so I hope you got it.

I am closer to Asheville it is about a 2 hour drive but WELL worth it if I can get in with a Dr. there.I am going nuts with worry!It is sad I can't get in with any Dr.s either I am too far along with existing problems OR no one knows of Cholestasis or are familiar with fetal heart arrhythmias.I wish right now I lived in a large city where I am sure there would be better choices.When I call the Dr.s I ask if they are familiar with the 2 and if not no point in going I need someone who is or at least knows something of the 2 especially of the Cholestasis.Why am I having such a hard time??? I guess my best bet right now is to keep my Nov.3rd appointment and PRAY they will know something about the 2 and if not then ask them who in the world does! I KNOW I am not the only person with this.Christie2004, if you did not get my email you can email me at
***@****
I need any help I can get and if you can refer me to someone I GREATLY appreciate it since I just can't seem to get in any place or find a Dr. who has knowledge of the cholestasis. Any one with any other information please email me too !! Thanks for all replies and help.
Shannon

[ipray4bb]

Well I never heard back from christie2004 so if anyone else can help please I need help with finding Dr.s .This is so hard for me right now.I have tried all suggestions and am just right now looking for as much help as I can get.
Thanks,
Shannon