I really need your help. i can't stop crying.
We had an ultrasound last week where the midwife wanted to send us for more detailed ultrasound scanning due to "echogenic kidneys". I'm almost 22 weeks pregnant.
We went today and the doctor said that the baby's kidneys are in the 97% percentile in size and still showing echogenic. He thinks it may be Autosomal Recessive Polycystic Kidney Disease (ARPKD), BUT evidently I still have urine in my kidneys and the amniotic fluid is totally fine in general, so he's not saying for sure that it's ARPKD.
He essentially made us feel that there is no hope though and that we will have the decision to either abort the baby or not have it receive comfort care upon birth.
He says I need an amnio, but is it possible to have ARPKD if the urine in the baby's kidneys appears ok and so does the amniotic fluid, but the kidneys are in the 97th percentile? Why is the doctor making it seem like there is no hope whatsoever? What else could it possibly be? Can kidneys just be that large and show echogenic??
Thank you for your help.
UPDATE: Hello,
I just wanted to update everyone who responded so kindly to my post. I truly thank you for your kindness and thoughtfulness from the bottom of my heart.
It turns out that you were right!!!!! We got a second opinion and that doctor still said that there was a huge amount of concern; however - guess what! As long as she keeps up her amniotic fluid she *should* be ok. And our little fighter did just that!
Our little love was born healthy in January. We have done follow up tests and everything has come up squeaky clean.
We can't thank all of you who responded to this post and gave us your time and hope.
If anyone comes across this post who is suffering from being told the same diagnosis, PLEASE feel free to contact me at ____@____.com (no spaces) so I can help you through it.
-O.
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Thanks everyone for your helpful and thoughtful responses. We went for a second visit with the same Perinatologist and also a Genetic Counselor on Monday and then got a second opinion from another Perinatologist that afternoon. They're thinking there's a 75% chance it's ARPKD, but the hope lies in that she's still making good levels of amniotic fluid and is making urine in her kidneys so they're working. It isn't as much the death sentence the first Perinatologist gave us on Friday which was completely out of line. He softened his opinion a bit on our Monday visit as he evidently did some research or talked to other doctors. I can't post his name yet as we're still having to work with him, but I will in the future so noone in the Atlanta area goes to him and has the same horrific experience. I had an amnio done on Monday and we'll rush the results and will get them in 3 weeks or so to see if it's indeed ARPKD, but chances aren't looking good that's it's anything else. The doctors say the amniotic fluid could begin to drop. If it remains stable for the next few weeks, even if it does turn out to be ARPKD, then we have a chance of possible survival at birth as it means the lungs are working (which is the issue with ARPKD - the kidneys get so large and stop working so that the lungs can't work). So, it's all a waiting game at this point in time. We have our next appt scheduled for Tues to check how the amniotic levels are doing, and for the week after to see any variations.
Doctors often will give the worst case scenario so they don't get sued. Definitely get a second opinion and even a third. Also you should be seeing a perinatologist (maternal-fetal medicine specialist) if you are not already!
I think I would get a second opinion about the benefit of comfort care, if it does turn out to be ARPKD. ARPKD is very rare, so I would try to be positive since the doctor cannot be sure until an amnio is done. This must must so hard for you. I am so sorry you are having to go through this. You and your baby will be in my thoughts. I will hope for the best outcome and health of your child.
This link simply explains what "echogenic" means, by a midwife:
http://answers.yahoo.com/question/index?qid=2008120112263...
This link explains more thoroughly what ARPKD is:
http://en.wikipedia.org/wiki/Autosomal_recessive_polycyst...
High Risk OB consult. Amnio scheduled and done. Do what you need to do before you decide. Be absolutely sure first before deciding on abortion. Too often the ultrasounds are not 100% accurate and termination occurs. There could be several things going on here and you need to be informed completely, first.
Amnio's aren't too bad. I didn't want one for a myriad of reasons and then ended up having one because of am abnormal AFP. Everything was fine, healthy baby. Follow instructions for the after care and all should be good. I wish you Blessings and calmness during this time. Praying for the best for you and your baby.
ARPKD is a possibility. Whatever the cause, the concern is that the cysts are distroying the kidneys. The fetus's kidneys produce a significant portion of the amniotic fluid. Without enough amniotic fluid the lungs will be small. The question that is difficult to answer is how small are the lungs. When the lungs are small it's difficult to impossible to ventilate and oxygenate the baby after birth, despite our ventilators and medications. The other major problem is kidney function. If there is little or no kidney function, the baby will need peritoneal dialysis to do the work of the kidneys. This can be difficult with lung issues. Depending on how bad the kidneys are, will determine when the kidneys will be removed. A renal transplant is often done around a year - if the child survives. You did say if you baby is a boy or girl. If it's a boy, it could be posterior urethral valves. You didn't say what type of OB you saw. You need a high risk OB. You need to have the opportunity to talk to neonatology (specialists in caring for premature and sick newborns) and pediatric kidney doctors. Usually these complicated services are at big university hospitals.
I am so sorry you having to deal with this. If abortion is an option for you, you don't have much time to make the decision. Intensive care is designed for caring for someone who has a condition that can be treated and the person can have a meaningful life after intensive care ( meaningful life as defined by the family). Comfort care means the goal of care is to keep the person as comfortable as possible for however long the life is. Both choices mean your baby is cared for. You can choose intensive care initially and then decide to change the goal to comfort care later. I say this, but there are variations on how well an institution is comfortable in the process of deciding to provide comfort care. My thoughts and prayers are with you. This is a very difficult situation. So sorry you are going through this.
Hi,
I am B. and I deliberately need some help as my child is having echogenic kidneys. Please let me know your convinience so that we can connect. urgent!
Get a second opinion. Schedule it today for this week -- if you are even slightly unsure you might abort, you might want 2 (or 3 or 4) opinions before making a decision, and that takes time. If you would keep your child irregardless, still get the other opinion(s) -- medicine is an art and doctors need people skills...
Not only this, you might wish to deliver with a more "optimistic" practice -- I had a less "optimistic" practice for my first delivery (Atlanta OBGYN) and had to insist bringing in a doctor DURING delivery or I would have "HAD to have a c-section" without that being the case (I was vacumn assisted with my first). I used Wellstar OBGYN across from Kennestone for my second and they were very "optimistic"... ###-###-#### They might be far but might offer suggestions closer to Roswell, or a practice specializing in pediatric diagnosis and options.
Research for yourself to know more while you look for opinions and options.
www.pkdcure.org (PKD Foundation)
Here's a blog from a woman here in Atlanta: http://kidneysandeyes.com/about/
Should the absolute worst happen: www.nowilaymedowntosleep.org
We live in a wonderful age where both miracles and misdiagnosis happen:)
My blessings to your family as you navigate this.
I suggest you look further, soon as possible, check out other opinions and although I do not want to give false hope if there is clearly none I would like to say I was told to abort my child for different reasons, refused and he is a strong healthy twenty year old. My prayers are with you in such a difficult time.
Go for a second opinion, and a third and a fourth if you have to. I have a friend who was told at her 16 week u/s that her baby would not survive past 20 weeks and that she should abort. Her dr went so far as to tell her that if it were his wife, he'd have her terminate. My friend went to several other specialists and high risk ob's to find out her baby had down's syndrome. Her little girl is now a beautiful healthy 2 year old who's a true little miracle. Make sure you have every answer you need before making a decision. And remember dr's can be wrong.
I would definitley go get a second opinion. My neighbor was told she had fluid on her babys kidneys and the baby has down syndrome. She was soooo upset. The dr was wrong......he is a healthy 4 year old now.
A friend of mine was just told the same thing and had about a million and twelve ultrasounds throughout her pregnancy to check and double check the results. I'm not sure why she didn't have an amnio, although I suspect it was because termination was never an option for her, so she didn't get a definitive answer until her son was born completely normal.
