Pregnant with CF baby and denied special care

[anonymous]

Am I overreacting to a situation that is not as serious as it feels?
Okay, my 16 week u/s showed an echogenic bowel and after an amnio the baby was diagnosed with CF. I have a military dr so I must have a referral to see a specialist. My dr agreed to send me back to the specialist, which is in Savannah an hour away from me, at 32 weeks gestation for a follow up u/s. I went and the Perinatologist noted the baby has some dilation to his bowel (1 cm), he recommended weekly u/s to monitor the dilation and he strongly recommended I deliver at a hospital with a NICU, because my area does not have one.
He wrote a report and sent it to my Dr...two weeks go by and I hear nothing. I'm now 34 weeks. Yesterday I finally get in touch with the Lt. (My dr's nurse) after leaving several messages which went unanswered, and he informs me my dr doesn't see the need for a follow-up u/s and say's he is not considering transfering my care. I went over there and sat down with him yesterday and he starts going on about how the Perinatologist always find something wrong because it is their job, he says chances are the baby won't need emergency surgery and if complications arise it is normally a couple days after delivery. I would much prefer to have my care transfered because if I deliver in Savannah my baby won't have to be flown 2 hours away for surgery, he will be cared for right there, where I will be. Charleston is two hours away from me and if the baby has to spend time there I will have to travel further to see him. But, my dr makes me feel like I'm a paranoid, overreacting pregnant woman. He goes into all these odds and percentage rates and frankly I don't care, I want to be prepared. He then asks, "What is it you want?" which made me feel like a jerk, like I'm asking for too much. I feel as though he thinks I am questioning his ability to deliver and care for this baby, and that is not the issue. He goes into this long spill about how 10 years ago these tests were not available and I wouldn't even know this baby has CF, BUT I DO KNOW, I dont see how that is relevant in the least bit. I just don't know what to do. My husband actually started seeing things from the drs point of view and turned on me right there in the conference room, I was shocked. He and I got into a debate right in front of the dr, how embarressing. So, nobody is standing beside me and I'm begining to feel like I maybe expecting too much attention to be given to this baby. But, I'm his only advocate and I want to make sure he is okay. I'm so worried, I think about it all the time. The Dr say's the odds of this baby having Meconium Ileus are only %5 and I should not worry about it. What do you think?
Jen

 

[anonymous]

Jen, I don't think you're overreacting at all. The fact that 10 years ago you might not have even known your baby would have CF has absolutely no relevance! We didn't know a lot of things 10 years ago, but I dont think anybody wants to take a step backward in medicine!

I would talk to your husband again and see if you can get him onboard with you. Even if it's not because he's sold on the necessity of delivering at a larger hospital with a NICU, at a minimum, this is one less thing you will be worrying about when it comes time to deliver. It is a stressful, painful, emotional ordeal as it is, I can only imagine how having the thought of possibly requiring a transfer would magnify everything.

If it's a possibility that the baby will have meconium ileus, I think you should be prepared for that. If you were in the middle of nowhere with no other options, that might be one thing. But if you CAN plan ahead, why wouldn't you want to? You are not being unreasonable at all!

I would definitely continue pushing for transferring your care. Best wishes, and I really hope your husband and your doctor come around.

-- Jenica

 

[JazzysMom]

I dont think you are overreacting. Your baby has been diagnosed with CF. The test is available nowadays & so you know. CF needs to be handled by a specialist. If everything goes well with your baby, fantastic. If something should need to be addressed you shouldnt have to have the baby flown out & you be 2 hours away worrying. When I was pregnant, I wanted to deliver near home. I wasnt thinking that because I had CF it wasnt a "normal" situation. I was comfortable with my local GYN & wanted to be near friends & family. My CF doctor noted that even tho I was doing excellent & the baby was fine, there was always that what if. If I delivered near home & something should happen to the baby, she would be transferred to Albany Medical which is where our local hospital sends out newborns with problems & I would go to my CF doctor in NYC. I couldnt imagine that so I agreed to deliver in NYC just to be safe. Stand your ground. The fact that you can give your child an edge on handling his/her CF before the baby is even born should be utilized to the max! The military doctor is not a specialist & by no means should undermind the potential seriousness of the situation. Yes there are specialists that over dramatize things, but better safe then sorry. SPEAK UP, BE STRONG!

 

[anonymous]

Thanks Jenica & Melissa - I wish I could get my husband to see things this way. I really don't feel like I am overreacting but when people keep treating you like you are, you start to question yourself.

Is there anyone who had a dilated bowel appear on u/s and their baby did not require hospitalization for any period of time? It seems as if all the stuff I've read on here indicate that if there is a bowel problem noticed on u/s it normally results in a hospital stay and or surgery.
Jen

 

[cfmomma]

My son was diagnosed at 18months and so I don't know much about meconium ilieus or what it's like to know your child has CF before he/she is born. However, you said you are your child's advocate and that is vital. Nobody is going to love or care for your child as much as you and your husband. Even though your husband isn't on the same page as you right now, talk to him and he will begin to understand. Don't be too hard on him, he was listening to what the doctor said and many people think doctors are like God. Have you talked to a CF doctor yet? If not, I would recommend the two of you going and sitting with the CF "team" and expressing your concerns. They will provide valuable insight.

I personally would deliver in Savannah, despite your military doctor's lack of support. Hopefully your baby will be born with no complications, but when it comes to your child it is better to be safe than sorry. You can get through this and I wish you the best.

 

[anonymous]

Sheli- I wish I could talk to the CF team, but guess what...My dr won't give me a referral to see them until after the baby is born. I have asked several times. Thankfully, I know a bit about CF because my step-son has it, if it weren't for that I would be completely in the dark about what CF really is. I would hate to be completely uneducated about CF and unable to speak with a specialist before bringing home a baby with CF. Even as it is, I would love to sit down with a CF team and talk about the disease and get information/resources they know I will need. But, my Dr thinks he knows everything and I shouldn't need advice from anyone but him.
Jen

 

[SeasonsOfLove]

I would suggest you call the CF doctor directly and just ask for a brief meeting - sometimes they won't charge for that. Or, you could call the CF Foundation and they might have a suggestion on how to handle.

Good luck,

 

[anonymous]

Jen, can you email me privately at division902@hotmail.com. Military or not YOU HAVE THE RIGHT to seek the PRE AND POST-NATAL care that YOU want. I really would like to ask some speciefic questions to give you some assistance, but not sure how appropriate it is on the site, so can you email me?


Julie (wife to Mark 24 w/CF) USN Active Duty

 

[denise]

You are in a very hard situation. I know how emotional being pregnant can be. I have had success by continueing to repeat my question to the doctors......Sometimes five or six times. I was laughed at and made fun of by the hospital staff when Iasked for a cf test for my 2 year old. I was right. You have to fight for your child. I have also had success telling a receptionist that I was convinced they were killing my child by not giving into my request. of course I had to cry and go on and on in front of the people in the waiting room. I think you have to be so determined that your husband and your doctor just finally give in to your demands.

 

[anonymous]

I think you are right Denise.

Will it always be this way? Is this just the begining? Will I be fighting the so called medical professionals forever? I know I am not a doctor, but when you feel something so strongly, its got to be relevant. Unless your a nut, and I am not a nut.lol At least I didn't use to be a nut, maybe I have turned into a nut somewhere between the second and third trimester.
Jen

 

[anonymous]

I have learned thru personal experience that military doctors (in my opinion) are the worst. Do what you have to do but have that baby in a safer place, one with a NICU. Contact Beth Sufian (an attorney with CF), maybe she can help you.

One thing I don't understand. Jen, if your stepson has CF, then you knew your husband was a carrier. Were you tested for carrier status before becoming pregnant with this baby?

 

[anonymous]

Jen-
You are doing the right thing and you are not overreacting by any means. The doctor is mistaken. There is a 10-15% chance for all cf babies to be born with meconium illeus. Since your babies intestines are dilated to 1cm and an echogenic bowel at 16 weeks means that your baby is at much higher risk of meconium illeus than the average cf baby. No question your baby needs to be born at the best possible hospital and a high level of NICU care. Local hospitals in your situation are not an option. I changed from my OB with my daughters birth to an OB at the best womens hospital in town due to their high level of NICU and next door the Childrens hospital. That was

I have shared some of my experiences with you. Jack's ultrasounds showed bright bowel at 24 weeks (not at the 18 week ultrasound) and his intestines dilated to 1cm before he was born. I had routine ultrasounds and fetal monitoring every two weeks during the last few months of my pregnancy. A surgeon at the Children's hospital who I went to see for an opinion while I was pregnant was doing research on the meconium illeus in cf babies. She told me based on Jack's dilation and echogenic bowel that there was about an 80% chance of meconium illeus. I was told by two surgeons before Jack's birth that echogenic bowel meant that the intestines had already leaked. Fortunately, they heal over nicely in the womb but it still means that the meconium inside of the baby is too dry inside of the womb. Therefore, chances of intestinal problems at birth are very high. Jack was sent to NICU immediately after birth and within about 15 minutes after Jack's birth, his tummy started to swell. He was able to pass his meconium with the help of 10 days of enemas and very qualified doctors trying to help him. His pediatric surgeon also was in the room at delivery.

That doctor of yours sounds uneducated on cf meconium illeus and has a ego as well. CHANGE DOCTORS (if at all possible!!) You can prevent surgery by using enemas. Jack was home on day 12 two days after his intestines cleared without surgery. He has had zero problems with his bowels since day 10 of his life. If your daughter does need surgery because enemas where not tried, it just gets way more complicated (long hospital stay and colostomy).That is significant and a blessing of finding out early. The 10 years ago comment your doctor made was absurd. Babies with meconium illeus would die if enemas and/or surgery werent preformed.

Get on the phone call your insurance, your step-sons cf doctor, the cf doctor who will be taking care of your baby, your perinatal doctor, a pediatric GI doctor you daughter will be using, get recommendations for another OB. You have to take charge and you no whats best.

I often find my husband acting the same way your husband did. He doesnt try to learn about cf, so I have to try and educate him. Have your husband read these posts. It helps tremendously. Also, I think I did forward you some info I have on meconium illeus, that would help for him to read as well. If not, e-mail me at sdelorenzo@sbcglobal.net and I will send it to you.

Those last few months of my pregnancy with Jack where definitely the most difficult for me in dealing with cf. The emotions of caring a baby that I knew had the disease, as well as trying to figure out what to do about his probable meconium illeus was SOOO stressful. It honestly has been much easier since Jacks birth.
Sharon, mom of Sophia, 4 today! and Jack, 2 next month both with cf

 

[anonymous]

Anonymous-
Yes, I knew I was a carrier. My husband and I have a 3 year old together and when I found out I was pregnant with her my Dr at the time suggested I be tested to see if I was a carrier. Prior to that I was not aware of the genetics of CF, I had a perfectly healthy son and never imagined I carried such a visious disease. I was tested and determined to be a carrier of the G551D Gene, an amnio was done which showed my daughter had inherited my husbands gene but not mine.
My husband and I both made the decision not to have any more children after she was born and for 3 years I took BC pills successfully. In November of 2004 I began taking antibiotics for a severe lung infection called plurasey (sp?) I was on them for a while but I'm not sure how long. I did not finish the prescription. Right after Christmas I began getting sicker, and I noticed I had missed my cycle for that month but I intially thought it was because of the medication and illness. But things did not get better and I started having severe diarrhea, my face broke out, and I was having a lot of cramping. On December 26th my husband brought me a pregnancy test, I hadn't even considered it to be a possibility but he had some kind of intuition that told him I was pregnant, and he was right. An u/s showed that at the time I took the test I was only 2 weeks pregnant, so I hope no harm was done from the BC pills, I never missed one in all those years until that line showed up on the pregnancy test.
I do not regret getting pregnant, it wasn't intentional but this baby is very much wanted and very much loved. Yes, I do feel guilty, I do feel responsible that he will go through his life suffering from this disease that me and my husband gave him. I regret having to give up my career that I have worked very hard at, to get where I am. These were the reasons we didn't want to risk it. But here it is. There's no turning back. But, I wouldn't change it. I love this baby so much, I look so forward to his arrival and I hope he is okay, and labor and delivery is okay. I think you may be asking to understand something that you really must experience to actually understand. I know a lot of parents make the decision to have another baby knowing they carry the genes and I personally did not want to go that route, but I do not judge them. I think they are mostly optamistic people who believe they will beat the odds, and sometimes they do. Its hard to understand the maternal instinct to want to nurture and care for a child, a child that is your own, that you created with the person you love, it is a very strong instinct. It has to be, otherwise women would have stopped after the first woman died giving birth, or the first child was born with a defect. This instinct goes very deep and is similar to the instinct to find a partner to share your life with. I don't know if the decision is ever 'right' or 'wrong' its a family decision, one that should be carefully thought out, but it is clearly not something that is easily understood.
Jen

 

[Seana30]

Dear Jen,

April, 2003 my 10 yr old daughter, Courtney, was diagnosed with CF after many years of weight gain, and stomach pain issues. Courtneys father is military, so from the time she was born we have always seen military doctors.

After two positive sweat tests the doctors wanted her to travel to San Antonio, TX for more testing. SA is about 800 miles from our home. We put in the proper paper work and we were denied. Some doctor looked at her records and said "she had 2 positive sweat tests and that is good enough". This is a doctor who has never seen or laid a hand on my daughter. I was horrified. How could this doc look at a chart and decide what MY DAUGHTER did or did not need!

It took me about a week of MANY phone calls, many tears, and a lot of yelling to get the paperwork approved. I feel that the military looks at dependents and thinks that we should be grateful that we get medical care at all.

I had to post and tell you.....it doesn't matter if you are overreacting. It is your right to get the medical care that you feel neccesary! You fight as hard as you have to if you feel that your baby will be better off born at a different hospital. Don't let anyone, including your spouse, make you feel guilty about getting the best possible care that you can receive! If your baby does need special care after birth your husband will be grateful that did what you did. If no special care is needed, great, but you took the precautions that you felt neccesary.

Two and a half years later I still find myself fighting for Courtney's rights. I make sure that EVER teacher she has knows her situation and that they cannot deny her any type of bathroom use, or deny her going to the school nurse. I will not back down to a doctor if I feel that they are not listening to Courtney when she has a complaint. I do whatever I have to do to make sure that Courtney is taken care of.

I have been thru all of the mess that occurs with military doctors and hospitals. You let me know if there is anything I can do, or advice I can give to help you thru this.

You are in my thoughts.

Seana

mother to Lauren, 14, no CF-Courtney, 12, with CF-Cameron, 10, no CF

 

[anonymous]

Seana-
Yes, I too feel as though they think we should be grateful for the health care we are provided with, as if it is free. It is not free, it comes with a very big price.

Is your husband still in the military? My husband has been in for 18 years and he will retire February/2007. I'm curious as to what will change once he retires. Will our kids still receive the same medical benefits? Does the price of tricare go up?
Jen

 

[anonymous]

Jen,

My daughter's father and I have been divorced for around 11 years now. He will be retiring from the Marine Corps in about 4 years. I have the same questions as you. I do not know how it works once they retire. From what I understand the dependent children receive health benefits till age 18 or out of school, but don't quote me on that. I will try to do some research on it, and if I find anything I will let you know.

Seana

mother to Lauren, 14, no CF- Courtney, 12, with CF- Cameron, 10, no CF

 

[anonymous]

My dad was retired military, and I was able to keep my medical benefits until I was out of school. This was several years ago however, so I don't know if that has changed since then or not. You should be able to find out by making a few phone calls.

former military brat

 

[jenniferp]

Thanks for the info-