I am 36 weeks pregnant with a baby that probably will not make it due to posterior urethral valves. He was diagnosed at 20 weeks which by the time we caught it his kidneys had failed and there is no emniotic fluid. I am just wondering how do you deal with everyday life after you loose the baby? He has a 1% chance at making it more then a few minuets out of utero. I am trying very hard to be stong for my almost 4 year old and I believe I am doing well at it. We talk about how he is going to be an angel and help God pour out the rain. I tell him that is how we will always be able to play with him. My biggest fear with this is he has a brother from his biological father and he knows what being a big brother is all about. I am scared this will hurt him even more then it does me because he is always asking when #2 will come out and play with him. I know I am strong and working will help me deal with it. Any good tips from moms who have lost children on how to help the oldest deal with this issue and how you move on yourself. I know I will always iss my little turtle as we call number two but I also know that God has his reasons.
After 2 neuphrologists 3 seperate high risk doctors and 3 very painful amniosytisis (they had to tap his bladder) there is nothing we can do to salvage his kidneys. Also considering there is no emniotic fluid. His lungs are not developing. I have faiith that God will do what is right for my son. I pray for the best expect the worse. I am going to have to read through the posts again to see who wrote what. I am glad mamapedia is here so I could have you wonderful women to help me through this.
Momma L- I visited the site. It is wonderful. The cost is a little high considering I barely make due now with all of our new expenses but the site is beautiful and I thank you so much for the recomendation.
Cheryl- I am sure I will be in need of a good therapist. Right now I am glad to say that my ob-gyn is taking care of me not only physically but mentally as well. We live in a small community and she is one of those if i need her I just walk to her house.
Debi- We are planning to have a funeral for him. He will be burried with his name ( Liam Douglas) after the two best men I have ever known.
As for my son- He is the only reason I am so strong through all of this. I feel I have to be his rock. He handles this part very well but I just worry what he will do when we cannot bring little turtle home.
I will never give up hope for my little turtle. As long as he is alive there is a chance. And believe me a butt in the ribs really lets me know he is alive.
And believe me I have had my fair share of tears in the bath-tub. I cry when I am alone. Otherwise they are always there I just dont let them fall. Thank you to all of you for the advice. I am fortunate to have a strong support team.
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M.B.
answers from
Minneapolis
on
I'm so sorry you're dealing with this. There are a lot of online support groups/message boards at babycenter.com. One group is dedicated especially to mothers whose babies have a condition that is fatal or has a poor prognosis:
It might be helpful to connect with other mothers in the same situation.
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R.R.
answers from
Los Angeles
on
I am so sorry. I lost twin girls who were stillborn, and my daughter had so been looking forward to being their big sister.
First and foremost, take care of you. Your son will feed off how you are doing and handling things.
Remind him that his little brother can look down on him from heaven, and anytime he wants to talk to him he can. Don't be surprised if he becomes his invisible friend. A friend of mine had 3 stillborn children before she delivered her daughter who is now 17. She took pictures of them and has them on the wall so her daughter grew up knowing she had older siblings, so make sure to take pictures of your baby son. She also made each of them small baby albums she has given to her daughter. Also, if you plan a memorial ask your son if there is something he'd like to do for his brother, draw a picture, give him something of his, something that he chooses to do.
If you can find it there's a book, All Shining in the Spring: The Story of a Baby Who Died written by Siobhan Parkinson, with a similar story to yours. In it Matthew is looking forward to the new baby and planning how he will help with looking after his little brother or sister and the games they will play when the baby is older. Then there is sad news. The doctor tells Matthew's parents that the baby is not growing properly inside its mother and will not be able to live after it is born. It was written by the author to help her own son cope with the death of their new baby at birth, and is a child-centred, simply-written book, intended to give a child a clear and sympathetic understanding of the death of a baby, be it a family member or not, and to deal with the feelings and questions which such a death raises.
Praying for God's comfort and strength for you, {{HUGS}}
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B..
answers from
Dallas
on
I have no advice, I'm sorry to say. I just wanted you to know, I'm saying prayers for your family. I admire your strength and faith. Just from this short question, I can tell you are a wonderful mother and beautiful person.
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C.O.
answers from
Washington DC
on
I cannot begin to say how sorry i am.
I lost Alexis at 22 weeks without warning.
Nicky's God parents lost their daughter at 40 weeks - she was still born and still to this day (16 years later) they do NOT know why....
You take a deep breath. Let it out slowly. Take one day at a time. One moment at a time. You will cry at the littlest thing. You will laugh and feel bad for laughing. Emotions are all over the place.
Life does go on. You will NEVER forget. EVER. But as time goes by, you learn to pull it out from a drawer in your mind and touch it/feel it...it takes time. You might need to talk to a therapist to learn how to compartmentalize your feelings. This is a devastating loss. Accept shoulders, hugs and help from friends.
I'll be praying for you.
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J.C.
answers from
Philadelphia
on
I am so sorry you are going through this. As a mother who has buried a child all I can tell you is that it is the hardest thing I have ever experienced. My son was 17 days old when he passed away almost 11 years ago and it is still hard. Although I do not believe time heals all wounds, with time you do get better at coping with it. Re: your son... kids are incredibly resilient and he will be fine as long as you are fine. My daughter was a month shy of 3 when her brother died. She actually did quite well although when her sister was born 2 years after his death she was very anxious we would loose her too. She is still very protective of her sister. I will pray for you, your baby and family. God Bless. You sound like an amazingly strong woman.
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D.S.
answers from
Kansas City
on
I am so sorry about what you are going through and so humbled by your strength.
A friend of mine (I met her shortly after this happened) knew her second baby would not survive outside her womb and carried him to full term, enjoying every minute she had with him while he experienced his only "life" within. Her family and friends were there to support her and her family. They gave him his name, had a proper funeral and burial and honor his birthday/passing each year. She never forgets him and will always have two kids. Her daughter was probably a little older than 3 when it happened and she seems to understand now what happened but not sure about then.
Warm thoughts to you.
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D.B.
answers from
Charlotte
on
I am so sorry - all of us are.
Please talk to the social workers at the hospital about getting counseling for you and your family. You need to know how best to approach it for your child's sake. And there is nothing wrong with getting help for yourself. I cannot imagine being in your shoes.
Dawn
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M.L.
answers from
Houston
on
I am so sorry, I have not experienced this and you are handling it so gracefully, with so much tender concern for your son. your family will be i my prayers.
I don't know about explaining a loss of a baby brother, but my boys, the same age as yours. ask about playing with their grandpa, and we have to tell them that they will be able to play with him in heaven when they too go to join him, but that we won't be able to physically see or play with him like we are able to with other friends and families b/c their body is not on this earth, But we say we can always remember him in our hearts and even talk to him if we want too.
Do you have a memento at all? I know this artist makes mini sculptures of angel babies for families with lost children. I have even seen her have special little turtle ones. She custom makes them a lot, she made a figuring of my father when he passed and it was beautiful.
My son lived three days with trisomy 18. We will never forget him. Some things that we did was to take a lot of pictures. We did not know he had any problems until he was born, so had no time to be prepared, if you can ever be prepared for something like that. My son was in second grade when he lost his brother, and we made sure that he had a chance to hold him, and know him even though it was only for a short while. Baby Roy would only open his eyes for his big brother, and that made their bond special. We still do things in his memory and he was born in 2001. You are in my thoughts and prayers because this is really one of the hardest things I have ever been through. Surround yourself with supportive people, contact Compassionate Friends, and cherish every minute you have with your son. One thing we still do is put our change in the Ronald McDonald House box at McDonalds in his memory since we stayed there the night before he died. I taught my son to do that and every time we do, it is a way that we are telling each other that we remember him too....
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L.M.
answers from
New York
on
You made me cry, you are so strong and so brave. I have not had to experience this but I am afraid I am so much weaker than you...I would just be a blubbery crybaby about the whole thing.
Obviously I hope you get a miracle. I am not sure if you have checked with the topmost experts you can? I'm sure you have...just thinking out loud.
I am very proud of your conviction in your faith and your strength and I am sure you will be good to your son. You will know what to do.
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T.F.
answers from
Spartanburg
on
I'm so so sorry. Please know that my thoughts and prayers are with you and your family...and will continue to be! Your son sees...and feels...your strength. And it's ok too to not be strong when you can't be. I think it's times like these that you feel calmness and strength that you didn't know you had. Yes..God does have his reasons and will also be with you through all of this. We are sending our love, thoughts and prayers to you & your family ~ always ~
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C.C.
answers from
Houston
on
I am wishing for a miracle for you. My deepest regards. Speechless.
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D.T.
answers from
Dallas
on
I am so sorry to read your post. I wish I had the words to help you and your family...I just wanted to say my thoughts and prayers are with you and your family. You sound like a very strong mommy--you have explained it to your 4 yr old the best way I would know how.
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H.M.
answers from
Omaha
on
I've had the misfortune of losing 5 babies. All were miscarriages or still borns. It hurt terrible but I found with the last it hurt the worst. My son was in 1st grade and my daughter kindergarten. They started to understand more than they ever had before and I told them about the baby and they were so excited! It didn't end well naturally. Then I had another baby after that and it was a live birth but my baby ended up being very sick and went through 4 surgeries, including open heart, before he was even a year old. That was very hard on them too.
But my kids had to deal with it all too. They asked and asked and asked questions till I thought they couldn't anymore. I also remained strong for my kids but to the point where I think they were confused on what they should feel. They weren't sure if they should cry, be sad, move on... whatever. I was their guide and unfortunately at first I was a bad one. So one day we had a pretty frank discussion and I told them everything and that crying and being sad was more than ok and mom was too. Since then everything has been much better. They still talk about the baby that died but just differently than they did before. I guess you would have had to have seen them before mom got "real" with them. Being strong is one thing... being fake to help shelter your children is a whole other thing. I found they were more relieved when they realized mommy was indeed hurting badly and it was ok to be that way. Unfortunately death is a part of life and putting a mommy face on I found wasn't actually a great idea in this instance. Death is such a impossible thing to understand and it was even harder for my little ones naturally.
So really I just say be real with them. Doesn't hurt to cry some in front of them... sure we have to keep on living and moving forward but squashing our emotions isn't good for anyone including them.
I have you in my thoughts and I hope you are indeed that 1%. No woman should ever have to go through this. You and your family will be in my thoughts.
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H.G.
answers from
New York
on
This may be of little help to you, but please know that there's a woman in NJ who is sitting at her computer in tears and heartbroken for you and everyone who has ever lost a child. I have no experience with this, but the only thing that comes to mind is that yes, you have to be strong for your young one, but you have to allow yourself to grieve too. None of us has the "luxury" of falling apart as I sometimes say - when you have children. Allow yourself to be human and work through all the emotions you have to. Take time to be alone or take a walk or whatever it is you need to do. Let other family members and friends help out. It will bless them by giving them something to focus on too.
I don't believe we're meant to understand why terrible things like this happen in our lives. We can only have faith that God can use situations to demonstrate His love for us - in your grief, you may also be able to feel great love from those around you. When you feel that love and support, you'll know that God is with you walking beside you. Seeing your faith in God through all difficult things may be an example to an unbelieving person. Your faith may bring someone else to Christ. You just never know.
I know none of that will make this any easier but I wanted you to know that we all grieve with you. God bless you and your family and I hope someday to meet your little angel who will be held by God until you see him again.
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S.H.
answers from
St. Louis
on
we lost our daughter during her 2nd day of heart surgery....at 19 days of age. Our older son was 6 at the time.
Use every bit of support available to you. Allow the tears to fall. Vent those screams. I found Peace as I learned to release my emotions. Bottling it up ....made it worse. Oh, & I did contact Compassionate Friends. An excellent resource.
BUT what made the most difference for me was a book which I read during that long winter after our daughter's death. I don't remember the name of the book nor the author. In the book, the mother's child was killed during a neighboring Indian tribe's raid. This event forever changed the mother, but she achieved Peace by knowing that upon birth - her soul & her child's were forever twinned. That analogy gave me the hope & promise of a future....
All this said, I did allow my son to see a part of what I was feeling. BUT as you've mentioned, we have to stay strong for the children already in our care. We made sure that our son saw his sister as often as possible. We made sure that he bonded with her. We also made sure that everyone in his life was on board & up to date, & capable/willing to care for him & his questions. A point of pride for me is that he's 24 & swears that when he has a daughter, she will bear his sister's name. :)
I think your closing line is the most important: God has His reasons. We don't always understand them, but we know that He knows.
As I look over my response, I realize this is all assuming that your child will not survive. Please know that my prayers will be for what Our Lord chooses is best, not what the drs are saying...or what we are assuming. Peace & Prayers to you. Please feel free to contact me....
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J.B.
answers from
Atlanta
on
I don't know what it's like, and I count myself so fortunate. I can only imagine what a painful time this is for you. I second Dawn B's advice - take any offers of counseling from the hospital, social workers, etc., for both you and your son. I hope you can find peace.
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M.P.
answers from
Green Bay
on
I am so sorry for what you are going through. I can not imagine.
In regards to your son being affected by "not bringing little turtle home". You sound spiritual, so you need to convey to your older child that God took Liam home to live with him in Heaven.
Whenever I have experienced death and young children are involved (like when a grandparent, etc. dies), I have given them a glass prism. I have told them to hang it in their window and that when the sun shines, they will see a rainbow on their wall. That is their loved one stopping in to say hi (same concept can be done with a wind chime). My heart goes out to you and you are in my prayers. I pray you will find peace.
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D.B.
answers from
Madison
on
My heart goes out to you. My brother and SIL just lost a baby at 21 days old. He was only home for 1 1/2 days and went to a Children's Hospital until he died. There's a program called "Now I Lay Me Down to Sleep" - you can google them. There are photographers that will come and take pictures (very tasteful) that serve as momentos. These are free of charge. They will come at any hour to the hospital to take pictures either before or after they pass. The hospital made them a plaster momento of his hands and feet.
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S.S.
answers from
Los Angeles
on
I can't begin to imagine what you're going through but I just want to tell you how much I admire your strength and courage and that I will be praying for you and your son. God bless.
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L._.
answers from
San Diego
on
I've had 3 miscarriages, two at the very beginning of the 2nd trimester. But it's not the same I know.
I would not and could not give up until after it's over. Doctors are sometimes wrong. Miracles sometimes happen. I know for a fact that this has nothing to do with God. God wants that baby to survive. We live in a fallen world because of what we have done, not what God has done.
I would like to suggest that you watch the first 3 weeks of 2011 Andrew Wommack shows. You can find them on his website. You can google him. These first 3 weeks is all about healing miracles. One in particular is about a baby that was expected to have hyperplastic left heart syndrome. It was so bad that they did not expect her to survive. They have the films and the tests taken at the first hospital. But dad put this child in God's hands and stood on the scripture he knows talks of healing. By the time they got the baby to the 2nd hospital and re-ran the tests, the diagnosis changed and the baby came out of the life threatening symptoms that she was having.
There are videos online that I've seen of babies that were dead in their parents arms and came back. My own first daughter was not expected to be okay at birth. They expected a lot of problems. None of it came true.
I even know of a baby that has such bad brain scans that the doctors say he should be a vegetable. But he's 2 now and growing and behaving normally, learning, talking etc. The doctors are stumped. I've seen that testimony on another show.
I know it's hard to believe and raise your hopes against what the doctors have said. I will pray for your peace in this situation. God can bring a good thing from a bad situation. But he is not causing this at all.
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I.W.
answers from
Portland
on
There is a non profit group called Now I Lay Me Down To Sleep. They will send a photographer to the hospital & do a beautiful photo shoot with you & your baby. My sister had used this service in October when she lost her baby. The pictures are amazing! The best part is, it is free :-D
Www.nilmdts.com
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A.K.
answers from
Minneapolis
on
I don't have any words of wisdom, but want to tell you I'm so sorry to hear about your loss. Hugs to your family, especially your son.
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D.P.
answers from
Minneapolis
on
I don't know what to say other than you are in my thoughts and prayers. I lost 2 but at 8 weeks so it was a little easier to swallow. I can't even begin to know what you are going through but I wish you all the love and support in the world! It's God's plan.
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R.K.
answers from
Abilene
on
I am so sorry for what you are going through. I have not lost a child but here is a link to a wonderful blog. Angie also wrote a book called I Will Carry You. Saying prayers for you.
I am so sorry for all you are going through. With my last pregnancy my son was so excited for a sibling and carried the ultrasound photos around the house. I think that was the hardest part, explaining it to my living child. Now he knows he has three siblings in heaven watching over him. We pray for them together each night and that has helped me to cope. I'm sending you prayers of strength and grace for all that is before you. I'm so very very sorry.
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L.D.
answers from
Dallas
on
Bless you. A friend's baby was stillborn this summer and she has two older children, 3 and 6. Helping them through the loss was/is one of the hardest parts.
She has been very concerned with maintaining the memory of her child. She has a picture of the baby, framed, next to her other two children's newborn picture. She talks with her children and others openly about her baby and lets people know she WANTS them to ask about her. At Christmas, she got an Angel off of an angel tree and she and her two living children bought gifts, in her baby's memory.
At the hospital, she dressed the baby in the outfit that her children had picked out for her, and let them both see and hold her.
She planned a beautiful and heart wrenching funeral.
Bless you, bless you, bless you. I cry here at my desk for you and your family. XO
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M.Q.
answers from
Los Angeles
on
I too am so very sorry that you and you're family are going through this. I dont remember where i read it but it said that a good way to help children cope was to explain to them exactly how our bodies work and what happens when we pass away. Its not the best advice i know im sorry but before i read that i had a really hard time explaining to my 2 eldest daughters when someone/ something passed away because i was afraid to hurt/confuse them. I wish you the best and send u many many ehugs.
Have you heard of nowilaymedowntosleep? I think its beautiful.
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K.R.
answers from
Minneapolis
on
My heart breaks for you. I don't have any advice to offer but I did want to share with you a place called Faith's Lodge. It is for families who have suffered the loss of a child and I believe it is free. You can be there with families who have also been through the loss of a child. I will be praying for you and your family.
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S.R.
answers from
Chicago
on
I know exactly what you're going through...as I read your story im sitting in my desk crying out loud. Im sorry what you're going through.
I'm speechless, I too lost my baby girl at 20 weeks gestation time and doctors gave me absolutely no hope 0% chance of her living. I laid in the hospital bed hoping for a miracle to happen...and it did God had a better journey for her.
I silently cried and filled my head with many questions. Frankly there are no words to make this better.
May God guide you to find the courage and words to comfort your 4yr old and yourself.
I will have you in my thoughts and prayers.
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M.C.
answers from
Minneapolis
on
I am so sorry you are going through this. I can't imagine the pain that you are experiencing. I am very thankful that you have faith. I have been praying for you over the past days and that is what brought me to respond. I have also been crying for you because my son will be 21 months this weekend and he, at 5 1/2 wks after birth was also diagnosed with the urethral valves and the Vesicoureteral reflux Grade 5. The urologist said it is the worst case that he had seen in his over 20 year career. His ureters are badly deformed,and does have kidney damage, but they immediately upon discovery of the valve put him into surgery to remove it. He has also had the bilateral ureteral reimplantation surgery. I just wanted to tell you this so that you know there is hope. God does perform miracles and I have one to hold in my arms and I will pray constantly that you will too.
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J.K.
answers from
Dallas
on
I am so so sorry for what you are going through. I have no idea what you are feeling or have not experienced anything like this, so any words I may have won't be of much help...however...I will say I will keep you and your family and of course your son in my prayers.
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A.W.
answers from
Minneapolis
on
My prayers are with you, Liam and yor family. A dear friend of mine had a son pass away 2days after birth. She has spoken very highly of prenatal partners for life. She said she got a lot of support and encouragement during her grieving process.
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S.B.
answers from
Dallas
on
I am praying for the strength you need --so sorry to hear the news about your son. My son and DIL went through similar circumstances just 2 years ago and I grieve with you as i read your post. There is a group of volunteer professional photographers, "Now I Lay Me Down to Sleep " that take very wonderful photos of babies ( and families) that are not expected to live or those that are born still. We contacted them and a professional photographer came to the hospital and look wonderful photos at no charge and gave us the disc. This is a national group and they can put you in touch with a local person. They look wonderful photos of our granddaughter that we will always cherish. Find a support group in your area for parents that have lost a baby -that may help you heal and the parents can give you ideas on your son. Ask the social worker at the hospital or your OB/GYN office for information. My son and his wife visited the support group during the last month of her pregnancy and got some good ideas of things they wanted to do to remember their daughter (a handprint kit, etc) There is a group in the Dallas Ft. Worth area called MEND (mommies enduring neonatal death) and they have a website www.mend.org that has newsletters (including one on the topic of other children and loss) and a list of resources. Tampa FL also has a group called AMEND, and there are probably other groups across the country. I will keep you in my prayers.