Wednesday, July 31, 2013

A breakthrough for Potter’s babies

I remember reading when Representative Jaime Herrera Beutler was told that her baby had a fatal diagnosis of Potter’s Syndrome and that her and her husband decided to carry to term. I was so glad that someone in the public eye had made that choice so that others can see that it is a valid option and that terminating is not the only choice despite what doctors may tell their patients.

An article was recently published that shared more about her baby’s birth and life. Her baby was born alive and breathing. She has been doing well for 2 weeks now. During her pregnancy, several amnioinfusion procedures were performed to allow for lung development. Since her baby’s birth, she has been receiving dialysis for her lack of kidneys.

This is great news for families who are expecting a baby with Potter’s Syndrome because they know that there is hope for their baby to live when before doctors gave them no hope.

On the other hand, this news is quite the blow to families who have already had a baby with Potter’s Syndrome. This blow is especially hard for families who asked for the very same things (amnioinfusion and dialysis) and were told no. They were told that it would not help their baby and their baby would not survive even if these procedures were performed. Now it is proven that with these treatments, babies with Potter’s Syndrome can survive. It is a very hard pill to swallow and my heart goes out to all the families, including my friends, who have had to deal with some very tough emotions and grief with this news.

To Jaime and her husband, congratulations on the birth of your little girl. She really is a miracle. I hope that from her story she will be an example to other doctors out there that these treatments do work. I hope that more doctors will be willing to try them and save babies with Potter’s Syndrome. I pray that she continues to do well and that eventually she gets the kidney transplant she needs.

To my friends and Potter’s families, I’m so sorry that you were not given the chance to even try to save your very loved and much wanted babies. It isn’t right and it’s ok to be angry and to grieve over this news. I know how I would feel if it were my Carleigh and I would feel devastated to know that I could have done something but was prevented in doing it. My prayers go out to you.


belle said...

what bittersweet news indeed. thanks for posting this. i had not heard the great news yet. blessings dear friend.

Kelly @ Sufficient Grace Ministries said...

Yes to all of this. Love you.

Kelly @ Sufficient Grace Ministries said...

Yes to all of this. Love you.

Debby@Just Breathe said...

They should always listen to a mothers instinct. I read about this at Kelly's blog and it is so bittersweet. ((HUGS))

Jodymarie00 said...

I too am 23 week pregnant with a little boy who has BRA. You have to remember that the outcome of this little girl born with potters is unsure....and if she lives her life will be a difficult one. The kidneys are responsible for soooo many functions in a baby, including growth. Plus in true BRA there is no renal system including a bladder etc. although this story brings so many questions....the biggest one for me is the one pertaining to ethics. I love my baby...but a life consisting of growth development delays and suffering would be too much. I respect this mothers courage to not accept the normal prognosis for such a little one....but if you look into research from the 80s and 90s you will see that they tried multiple times to do what this woman did...without success and the research was halted for ethical reasons. I am a strong Christian woman....and every life is important to God no matter how short....but science should not replace God. This is something that is both a blessing and a curse...and although I wouldn't wish my pregnancy on anyone....I cherish every moment I do have with my little boy.

Pseudonym said...

I just went through all of it I was 5 months and my baby was diagnosed with potter's syndrome and I did not want to give up. But the doctors said their is no hope the baby will never live if I went full term so my husband and I decided to terminate the pregnancy it is the hardest thing anyone can do but I didn't want the baby to suffer or my 8 year old son to have to go through all of it. I am having a real hard time with the termination I sit and cry all the time I already loved my baby I never found out what the baby was because they couldn't tell. I would not want to see anyone else go through this it is very difficult.

Brandi Southall said...

I am going through this now. My doctor and the 2nd opinion we got wants me to induce labor. I'll be 20 weeks Monday and I am broken and confused. I'm scared of the guilt I'll feel delivering a child that will not live and then on the other hand the doctor says my organs will eventually crush my baby. They couldn't see gender for my baby either but said after "birth" I can hold and see th3 baby. When you say terminate is this the same thing my doctor is telling me to do? I know this is 4 years later but I hope you or someone sees this and can help me make some sort of informed decision bc the doctor isn't really helping.

Holly Haas said...

Hi Brandi,

I'm sorry you are going thru this. It's not an easy decision and one I would take the time to think through. Terminating is the same as inducing. Inducing is just a more gentle term. Inducing is a better way if you want to be able to see and hold your baby as compared to a D&E.

I know the drs say your baby could be crushed, but your baby could also be ok. My friend, Kelly, has a son named Thomas who had Potter's and he was not crushed at all. Just had a sideways pinky toe. She founded an organization called Sufficient Grace Ministries, which I am a part of.

I would check it out as it may help you on this journey. Feel free to email me to talk more

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