Refusing to Give Up

[iwontgiveup]

Apparently, ARPKD isn't one of the things that they really treat.

 

[fulloffaithnc]

I'm sorry to hear that your going through this. Best advice is just what you said "never give up" and keep searching for info and help. You never know what you may find. I wish you all the best Hun!

 

[iwontgiveup]

Thank you so much! Looking into the Children's Hospital here in my state!

 

[Renner]

My fluid has been running a little low. So after some deep research I found that eating watermelon is great for mothers kidney function and therefor could be beneficial to the baby. My fluid was 8 cm, after eating a large watermelon and consuming only water my levels went up to 15 cm! I would suggest eating watermelon hope it helps.

 

[iwontgiveup]

Huh.......weird.....I absolutely DESPISE watermelon....but I may have to try that! Thanks for the suggestion!

 

[TMonster]

That sucks!

Maybe these people can help you https://www.pkdcure.org/learn/arpkd

 

[vtjess423]

I just wanted to wish you the best of luck and I hope everything turns out well for you and your precious LO. You are right to never give up hope!

While I don't have any personal experiences to share but I will share a bit of a story about my cousin and her daugther. When she was pregnant she found out that she also had very low fluid and even had reverse blood flow through her placenta. This was something that her doctors had never seen and put her on bed rest indefinitely. It was hard on her but she did it while she could and it definitely helped with her fluid levels. They ended up increasing and the reversed blood flow slowed down as well. She was told that she would never carry full term and the baby could be born at any time. They were concerned about her lung development and were getting ready to put her on steroids to help get them where they needed to be. Her water ended up breaking before that and she was born at 28 weeks weighing 1 lb 6 oz and this was back in march. She's a strong little thing and while she's still in the hospital she now weighs over 7lbs and should be coming home soon!! They are definitely calling her their miracle baby. So I definitely believe that prayers can be answered.

I hope everything turns out alright and you get your miracle baby too. Good Luck!

 

[purplerat]

Hi there. I am so sorry you are going through this. My son Will has ARPKD and we found out at my 20 week scan that he had very large, cystic kidneys. He actually had too much fluid, but until he was born I had no idea what the future would hold. His kidneys failed last year and he had a kidney transplant (from his dad) in October 2012. He was just 2 1/2. He's now 3 and full of life and healthy. He has a gastrostomy (stomach tube) as he does not drink, but he is getting more "normal" by the day.

At the start we had many problems to face and a lot of time in hospital. He suffered high blood pressure and was very sick due to having no space in his tummy as his kidneys were so big. He didn't eat either. It's been a long journey and I remember feeling so worried on finding out my baby was so sick.

There is a Facebook group called 'ARPKD' that many mums and also people with ARPKD are part of. If you join so many mums who have been were you are will be able to offer you advice and also hospitals.

https://m.facebook.com/groups/20526281816?ref=bookmark&__user=582201089

One of the main issues with ARPKD is lung development. If there is little/no fluid the lungs can't develop properly, coupled with the large kidneys squashing everything. If your little girl has sufficient lung function, her future is bright. ARPKD is not a death sentence. Many people I know of were told there children had a 0% survival chance , and they are here and healthy years on.

I hope everything goes the best it can. If you ever want to chat feel free to PM me

Xxx

 

[iwontgiveup]

Thank you everyone so much for the encouragement. Purplerat: Unfortunately her lungs have not developed, but I still refuse to believe she can't make it. The more I find out, despite how frightening it may be, it actually gives me hope, because I'm seeing that babies, even with the underdeveloped lungs, make it. So since I'm still measuring (which my doctor has commented on the unusualness of twice now) and she's still doing well inside of me, I'm keeping up hope that she has no intentions of giving up, so her father and I won't either. I sincerely appreciate all of the kind words everyone is giving me. This thread has helped me keep going. There are days when getting out of bed seems too hard because all I can focus on is the chance she might not make it. So on behalf of our family, I want to thank you all. I hope things keep going well for baby Will, too. Thank you guys so much for helping me keep going. I'll check out the sites.

 

[Dinah93]

Best of luck to your little girl. Doctors can only see so much on ultrasounds. things could be better than expected when she comes out. We were told our DD had the fatal condition ACD, which usually takes babies within 2 weeks of birth and always within 3 months .... DD is now 16 months old, breathing well on her own with no visible signs of ACD - she's a real miracle.

 

[iwontgiveup]

Thank you so much for the inspirational story! I'm definitely hoping for amazing things!

 

[BunnyBunny]

This might be hard to read cause it was hard to write out without crying about it and I want to say 1st off that I'm so sorry you're going through this and my hopes and prayers go out to you.

my Brother and his 1st wife went through this. They knew something was wrong when she wasn't really getting a "bump" So she asked to get an early scan. That is when they saw that there was something wrong, the lungs were under developed and the kidneys were enlarged. They gave her less than 1% of survival and all kinds of horrible stuff. They encouraged the termination but she refused because the Ob said there was a extremely slight change that the baby would be born and they could fix the condition. Sadly my nephew passed away 18 hours after he was born. His G.I track never developed. They said the baby was perfect all but the G.I track. It was very sad and since the baby was a boy the genetic doctors gave her a high risk of this happening again and advised her to get sterilized. She didn't listen to the doctors again, and I have a lovely Niece and she has two other children with her new husband. So I guess the silver lining is that even if the worse happens maybe you will be granted those precious hours or days with your LO or that when the baby is born that it could be something they can fix cause the lungs did develop and the kidneys were I think still a little large but it was just that no G.I track and they couldn't create one. My Nephews name is Christian Ray. I have talked to both my brother and his wife (at the time) and both said that even knowing the outcome they would do it all over again exactly the same. also the baby didn't feel any pain they gave him morphine so he just slept til he slipped away.

 

[iwontgiveup]

Thank you. It's incredibly hard to hear of things turning out that way, but at the same time, it's not a very good idea to ignore a highly likely result. It is definitely a gift that they were able to have a second child who turned out perfectly healthy. Thank you for the story and the support. All of it helps.