Our daughter won't live very long.

[Mike Dolny]

My wife is 32 weeks pregnant. Our daughter has no functioning kidneys, also called Potter's Syndrome. This pregnancy started out as identical twins (2 amniotic sacs, 1 placenta). At 15 weeks, I went with her for a level 2 sono, expecting to find out the sex of our babies. Instead, we found out that one had died. Our hearts broke. It was recommended that we abort because of the possibility that our surviving baby might have sustained brain damage. We decided to have hope.
All was well at 22 weeks. On December 19th we went to Children's Hospital of Philadelphia for a fetal MRI, echocardiogram and ultrasound to see if our daughter had sustained any damage from the death of her sister. On our way there, (we live on Long Island, NY) we decided that whatever the outcome of the tests, we'd have this baby. Note that at that time, we thought the worst outcome would be brain damage (retardation). The tests went well, starting at 7am with the MRI, right to the echo, okay good, then the sono at 11. It was a fast day. At the sono, images were collected, then the Radiologist came in herself (she was monitoring in another room. My wife asked what was wrong (she's a Physician's Assistant student) and pressed for the answer. The answer was " I don't visualize any kidneys". My wife explained that the Maternal/Fetal Medicine specialist she had been seeing weekly for the last 7 weeks has been measuring the kidneys. The doctor said " Well, I can tell you what I see, and they are not there." It turns out that the doctor at home was measuring the adrenal glands! (Turns out it happens sometimes, but with low amniotic fluid, you'd think he'd look a little harder?) At 1 o'clock, we sat down with a genetic counselor, and one of the doctors from CHOP to go over the findings. That's when we were told that Potter's Syndrome is incompatible with life outside the womb. We were told that our baby had a good chance of going to term, but would die shortly after birth. Without amniotic fluid, the lungs won't develop and our daughter will go into respiratory distress. It just didn't make sense. After the death of her sister, we didn't find any mention of renal agenesis as a possible consequence. That's when we were told that one is probably not related to the other, that the absence of the kidneys is of itself a seperate finding. WHAT?? How could this be happening? This was our special baby, who had endured the death of her sister and was thriving (measuring at the 50th percentile, normal for a twin). Now we were faced with something unexpected and just unimaginable a few hours earlier. And the question came up. What can we do? We did not want to interrupt this pregnancy at 15 weeks, but now this baby was not going to survive no matter what we did. Our thoughts the following week were ones of our daughter being born and suffocating to death in front of us. Do we induce labor now? Well, we went to Columbia Presbyterian Hospital in New York City for a second opinion, and the diagnosis was confirmed. We left and decided that our baby will come into this world when she is ready..........so here we are. Statistically, the average delivery for this situation is 32 weeks. Today, Monday March 5th is 32 weeks. The average life expectancy is an hour and 15 minutes. I WANT MORE TIME!!!! The journey has been too long for such a short visit. I CAN'T WAIT TO MEET MY DAUGHTER !!!!

>>>> Molly was born on March 14, 2007 at 5:26am. At 33 weeks, she was 4lbs, 15oz. She was beautiful!!! She passed on at 6:41am. It was wonderful to have met her.

[S Jensen]

I am so sorry you are having to go through something that is proving what strength you both have, life is not fair. I wish I could do more than cry when I read this and tell you I am sorry. I am though, sorry you are going through this, sorry you are having to deal with this, sorry you won't get more time, I am just truly sorry.

Sara

[erinm]

I am so very sorry your daughter had been diagnosed with such a condition. You really have been through so much with the loss of her sister and now this. My son was diagnosed at 20wks with a incompatible with life diagnosis too. It was horrible. The only thing I can say that may help is that the shock wears off a little and it does get easier to handle. But the road ahead is not easy but it is worth it. You will cherish meeting your daughter and giving her every chance at being born alive in her time.
The hospital should be able to make her as comfortable as possible and help her so she doesnt struggle too much. A lot of babies who are "incompatible with life" dont seem to struggle too much. They dont cry much at all and they seem to sleep quite a bit. But that is a generalization not a medical certainty.

I am happy you found NILMDTS and will have wonderful pictures to cherish for a lifetime. it is honestly the best thing, besides my baby Tyler, that happened in all of this. I love my pictures and I look at them all the time. They are everywhere in my house.


Erin
mom to Tyler trisomy 18 angel

[Rayna']

I am so sorry. My heart just breaks for you and your wife.

[Jessi Hill]

Mike, I too am very sorry you and your wife have to go through this. Your daughters were given to you for a reason and all you can do is cherish every second... I wish I could tell you more. I have been through the loss of my son 4 years ago from Trisomy 9 (we knew nothing until he was born) and this organization was not yet available.
I am so glad you have found us and will be able to have precious photos of your beautiful baby girl. They are comforting to have. Maybe materninty photos would also be healing for you and your wife... it is something I wish I would have done back then.
((((((HUGS)))))))

[Lindzy Foster]

I am so sorry....I will be thinking about you and your family and praying for you...We just recently lost our daughter Kaydence Hope not even 2 months ago and cry thinking about what you are going through right now...just know that we are all here for you and your wife, I know that for me it helps so much to be able to come to this forum and just talk with other people who understand how I feel, and the pictures I have from NILMDTS are absolutely beautiful, I look at them constantly....
I am so sorry Mike.......
Lindzy

[Kamie]

I'm so sorry Mike, for you, your wife and your daughters... Life's pain is so unbearable sometimes... I can't see through the tears to type anymore you're all in my thoughts and prayers...

[anr0014]

I am so sorry to hear about your baby girl. My husband and I are going through the same thing right now, I will be 36 weeks on Thursday and Jake's diagnosis is also "incompatible with life". I have come to hate that term!!

Enjoy the moments you have with your daughter. It is amazing how much you can learn from these little ones, even while they are still inside. We cherish each moment with Jake, he listens to music, we talk to him, he is always kicking and hiccuping. Even though it is such a short time once your baby is born, she will always be a part of you.

I too am glad we continued with our pregnancy, we were given our diagnosis at 18 weeks and have come to accept that Jake will only be with us a short time. I reccommend reading the book, Waiting with Gabriel. That book helped me so much!

I wish all the best to you, your wife and your precious baby girl. I will keep you all in my thoughts and prayers...

[lori anderson]

I am so sorry. You and your wife will be in our prayers.
Lori

[Karla]

Mike,

I like to read this little quote I found on a grief site and posted on "a picture paints a thousand words", it gives me great cpmfort to think of my daughter this way>....


'A beautiful little flower,
Lent, not given
To bud on earth,
and bloom in heaven'

I also think that it would be nice if you and your wife give your daughters names. I am really very sorry.

Here are the words of the song "A visitor from Heaven"

VISITOR FROM HEAVEN -

A visitor from Heaven
If only for a while
A gift of love to be returned
We think of you and smile

A visitor from Heaven
Accompanied by grace
Reminding of a better love
And of a better place

With aching hearts and empty arms
We send you with a name
It hurts so much to let you go
But we’re so glad you came
We’re so glad you came

A visitor from Heaven
If only for a day
We thank Him for the time He gave
And now it’s time to say
We trust you to the Father’s love
And to His tender care
Held in the everlasting arms
And we’re so glad you’re there
We’re so glad you’re there

With breaking hearts and open hands
We send you with a name
It hurts so much to let you go
But we’re so glad you came
We’re so glad you came

I wish I could say more, do more to take away your pain.

Karla

Mom to a beautiful flower, Cydney Paige

[Tasha Nicholls]

Mike,

I can't imagine how hard this has been to lose your sweet baby girl and now find out that her precious twin sister is not going to survive. My heart, thoughts, and prayers are going out to you and your wife at this time and will continue to be with you through this horrible nightmare.

I am so sorry for your loss and for the awful diagnosis that you now face...

[Cheryl Haggard]

Hi Mike,
I talked with you on the phone last week...I am glad to see you here, and hope that you can find some strength within these pages, and from our wonderful members.
I posted this story on a seperate page on the forum, but thought it was appropriate to post this here, for you and other families who will be losing their angel too soon...I hope this brings you all some peace...
Cheryl


The Brave Little Soul
by John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked." God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and I will bring you home."

Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

[Karla]

WOW Cheryl!!!

I am totally captured by that story, it makes having Cydney Paige sacred and beautiful even through all the pain and hurt.

Thank you for sharing that story. It has lifted me up!! Today is Cydney Paige's 16 month birthday!!!

Karla

[tinantravis]

Mike--
I am so sorry for your losses. We, too, were given the diagnosis of "incompatible with life" at 32 weeks because of triploidy and our son, Isaiah, lived for one hour. We'd all take the pain away if we could. May you be blessed with the services that NILMDTS has to offer. Please reach out to us...we have a lot to offer (even during the toughest of times). To help myself get through the tough days, I remind myself "I HAD him--I did NOT lose him."
God Bless,
Tina