Sunday, August 21, 2011

The more detailed results we got from the perinatologist...

As you have already heard. We did not get good results from the perinatologist on Friday. She is taking a closer look at the 2nd level ultrasounds they did and give us more information on Tuesday morning.

On the ultrasounds they could not see any kidneys in the baby, because there is no kidneys baby is not recycling amniotic fluid and without amniotic fluid the babies lungs have not developed fully. The condition of missing both kidneys is called Bilateral Renal Agenesis. I've done a little research online this weekend and the prognosis from Dr Google does not sound promising, maybe less promising than what the specialist has told us so far. The absense of one kidney (unilateral renal agenesis) is fairly common and not considered a serious problem, the absense of both kidneys is found in approximately 1 in 4500 babies and is usually a genetic defect although thats not always the case.   Most of the time, this condition effects males more than females. The condition is considered fatal. Most babies are either stillborn or die within a few hours of birth. Most of the websites I read though explained the problem as being mostly with the effects on the breathing organs like the lungs. Only 1 website gave us any positive information and it was very limited positive outlook:

"Neonates born with bilateral renal agenesis are immediately placed in the neonatal intensive care unit. The level of renal and respiratory function is immediately assessed. Evaluation is also made of any other malformations in bodily systems. Once the long-term prognosis of survival is determined, a treatment plan can be addressed. If a neonate with bilateral renal agenesis has severe respiratory distress from severe pulmonary hypoplasia, no further treatment may be the decided course of action. If lung development is sufficient to respond to treatment, mechanical ventilation can supply respiratory support. Management of renal failure involves a complex course of action taken to address all the consequent complications. Adequate nutrition with restricted sodium and fluid intake may be achieved through a nasogastric feeding tube. Medications and vitamin supplementation can be used to address electrolyte imbalances from lack of kidney function. Because the kidney is responsible for vitamin D formation, vitamin D therapy is important. Calcium carbonate is also supplemented because the kidneys are not present to regulate calcium levels in the blood." (this was the only website to offer any sort of hope that they can do anything after birth regarding the kidneys)
"Bilateral renal agenesis has a very poor prognosis. It is usually fatal in the first few days of life. The usual cause of death is respiratory failure and acute renal failure during the neonatal period. If survival progresses to early childhood, patients may have chronic lung disease or chronic renal failure. If the lungs have sufficient development, a kidney transplant is necessary for survival. After a kidney transplant, the prognosis is improved." - www.healthline.com

All other websites gave us no hope of survival telling us that all babies have died within 4 hours of being born, the general recommended action is to terminate the pregnancy upon diagnosis, meaning they would induce now and deliver the baby.

We have decided not to do anything as of right now incase there is some sort of hope. We meet with the perinatologist again Tuesday morning to ask more questions and get more information. We will be getting a second opinion from another specialist and also talking to our regular Dr when she returns from vacation. We don't know what is going to happen, we don't know what is in store for us or what we are going to do at this point other than giving this baby all the hope and prayers we have in us. We haven't given up hope yet that maybe there is something they can at least try to do to help the situation... although so far everything seems a bit hopeless for this little one. Our only real hope is that maybe they can infuse water to the baby, use steroids to build the lungs, provided that works, babis resperatory system should be ok and the only issue would be the kidneys... but this is only our uneducated outlook on what they can try to do... I don't know if they can actually do that at this point.

The hardest part is that right now baby is jumping around, kicking, and playing in there as if nothing is wrong... everything else on the baby is developmentally fine, the only issues being the kidneys and the lungs.

This has been very tough to write, and put together so it makes sense to everyone. We are trying very hard to be strong, keeping people posted and talking to people about whats going on is helping us get through. We are trying very hard not to get our hopes up that anything will change, but we have hope and faith that there is something they can at least try to do in order to semi-fix this.  Derrick is being strong for me. He's being much stronger than I am at this point. He's been more than supportive and trying to do everything he can to make this a little easier for me. Without him and Evelyn I'm not sure what emotional state I'd be in right now.

Keep the thoughts and prayers coming as they are greatly appreciated during this difficult time. Thank you for all your love and support...

8 comments:

  1. Oh, sweetie I am so sorry. You are definitely on my thoughts and prayers.
    Laurie

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  2. You are all in our thoughts and prayers.

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  3. I am going through the same thing. I'm getting more depressed as time is going on feeling the baby move. It's hard to not cry out of no where. My baby has no amniotic fluid or kidneys.

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    1. I'm so sorry to hear you are traveling this long difficult journey. My heart goes out to you. Please feel free to reach out anytime. <3

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  4. I'm now going through the same ordeal you did.. No kidneys, no fluid, poor lungs. It's soo horrible I found your story helped along with so many, An knowing we are not alone and it's happening to so many out there. For such a rare and freak occurace it's happening a lot. It's just not fair ☹️

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    1. Hi Marissa, I'm so sorry to hear about your sweet baby. I'm glad to hear my story has helped you. Feel free to contact me anytime. Sending thoughts and prayers to you and your family as you navigate this journey. <3

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    2. Thanks for your reply 😘 Yes can you send me your email? Or I'll post mine. He hasn't yet been diagnosed with potters but I know it is they said till he comes they can't diagnose him because he has an other thing going on that is a similar sypthom of Potters but there unsure really them selfs if you ask me 💕

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    3. Sorry for the delay! Email me samakasrc@gmail.com

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