How to prepare......

[KEA's Mom]

I've posted several times about my best friend who is pregnant and her daughter has been diagnosed with Trisomy 18. She's 27 weeks pregnant. Her doctors have told her the baby won't survive and haven't provided any additional information on the possibilities that may occur. She's been instructed to meet with the NICU team to discuss their birthing plan. I've read alot on Trisomy 18 and it would appear that the potential exists for her daughter to survive birth. My friend has not deluded herself on the reality of her situation but there does seem to be a variety of outcomes. For those that have experience with this, personally or thru a friend or loved one, did you purchase items to have at home to take care of your baby in case they are to come home for a time? I have bought her a beautiful blanket for her daughter and I would certainly run out to purchase anything she thinks she needs depending on the circumstances. We are quite the pair, she and I. We talk of my daughter, Amanda, and we talk of her daughter--of grief and sorrow and hope and love. I can't imagine why the Lord felt we should go through this together but she and I agree, there's no one we'd rather walk this walk with. Please keep her in your prayers.

[Christine Barrack]

Kristen,
You are such a loving friend. I have followed your post and have kept both of you in my prayers daily.
I do not have first hand experience with this. I do remember reading on the boards here about a Trisomy forum with additional information. I will try to find it for you.
If it were me I would try to be as prepared as possible for any situation (leaving without baby AND bringing baby home) because BOTH are possible. I think the blanket you bought for her will be very special. A birthing plan will help. In that plan I would contact your local NILMDTS photographer and talk with them for maternity and birth or angel sessions and have them on the birthing plan. Also consider contacting HAIN if not already for a gown, memory box or other items.
I think that the planning for the delivery and care for your friend after could be to provide support, meals, errands, list of people to contact and numbers, clergy and baptism plans, transportation to and from hospital and follow up visits, clothing for parents for different situations (possibly have them pick them out and pin a note to them for what they will wear them for-I know I couldn't even make those choices in the state of grief I was in and had nothing that fit after delivery, it is difficult to shop at the time of need in my opinion). Contack the local hospice to see what services they can provide and what documentation they require for those. Possibly meet with hospice in advance. A list of foods and brands the family likes. Many times in either situation it will help others to have this list to do some shopping for the family and get them what they like without a lot of questions. Contacting of the church they belong to as members may wish to help in some way. Contacting a funeral home (so sorry I have to say this and hope it isn't needed) and meeting with them to discuss final arrangements in advance-much easier to do in advance than at the time of need. Same for cemetary or final resting place.
For home? Meals, someone to help with house cleaning, support group that can visit, someone to take calls for the family, assistance with baby so parents can have some personal time if even for 30 minutes a day which may mean training on the equipment baby needs.
As far as home care goes I am at a loss not having that experience. Hope that others here will give you some suggestions for that.
I hope I have not been out of line or offended you in any way. These are the things I have personally done for family and friends that have had an angel or baby that was not expected to thrive long.

[meli]

I would like to add to Christine's list just one thing that people often forget but it is often needed especially if she has lots of family and friends coming through the house for whatever the reason.

Get toilet paper; soap; paper towels and trash bags. Also, paper plates and such are good simply so if there is food; dishes don't have to be worried about.

[Christine Barrack]

meli,
Those are good suggestions as well. Add tissues also, possibly some Tylenol.
My sister sent me fuzzy slippers, a fleece blanket, cuddle teddy bear and a soft sweatshirt to the hospital. It was very comforting to have those while there and at home. I would often wear them later and cuddle the teddy bear to comfort my empty arms. She also sent teddy bears for the children I had at home. Not sure about your friend. But in the event there are other children a book on going to heaven or a stuffed animal, a white t-shirt for babys foot or hand prints to be put on-anything that can bring them comfort.

[Dawn Marshall]

If you go to www.sufficientgrace.net, you can request a care package for your friend. Care packages are free for families. It includes a beautiful journal and a comfort bear which is handmade.

[Jayme]

We were in a similar situation but our little one didn't make it to birth so we didn't have to follow through with our plans for coming home. We purchased a few outfits for him and I made a quilt for him to have at the hospital. Our plan for items needed if he came home was to register for what we wanted if we needed it. For example, we knew we would need a carseat if he came home so we planned to register for the one that we wanted. That way we could send a parent or friend to the store and they would be able to pick up whatever we ended up needing. We didn't purchase any nursery items ahead of time because we knew the chances of him coming home were very slim.
I also recommend making funeral arrangements ahead of time even if you don't have to use them. We didn't and not only was it very hard to plan his funeral while greiving but we didn't have time to research and find a funeral home that we really like. The one we went to was ok at best and I probably wouldn't go there again but that last thing my husband and I wanted to do was drive to another funeral home and start our story again. The more you can think through and plan now I think the fewer regrets you will have and the more brain power you will have to simply enjoy whatever time you do get to spend with your daughter.
I realize I wrote this using you instead of she- sorry. My only other advice is to plan sooner rather than later. We were just getting started in figuring out the details when Justin passed away at 29 weeks. I didn't expect it to happen that early. He was not Trisomy 18 (although that was one of the considerations before he was born) but he had similar circumstances.
I am so glad that your friend has you. You obviously care very much for her.

Blessings

[motherofthree]

While I do have first hand knowledge of T-18, my brother was a very unusual case and lived way past what anyone would have had us believe. My mother was told he would not live past delivery. When he did, they gave him a week. Then 30 days. Then 6 months. Then a year. He lived much longer, but his is a very rare and unusual case. I think a very, very small percentage will live past a year.

What my mother focused on was making my brother as comfortable as possible for his time on earth. Because of this, I believe he led a relatively happy life, and had a smile that warmed everyone's hearts.

I sincerely hope that your dear friend receives more time than she expects, and more than the doctors seem to want to acknowledge. There are always miracles, and I fervently pray that your friend is the recipient of one of these.

[gtownherd]

My daughter lived for 4 days, this was a lifetime for my husband and I. let your friend know that if she makes it to full term that 50-75% of babies go home. No one will know for how long they will live. Just love on them for as
long as you have them.

[KEA's Mom]

Thank you-I will pass that on to her. She has only 7 weeks left and is getting very nervous. She'd like to keep her safe in her belly. She was recalling with her other two kids by this time she couldn't wait until they were born but this time she wants her to stay in there forever. She's met with the NICU team and it was very real and traumatic. She and her husband are taking it day by day.

[Lisa Kammel]

Kristen, I had a friend that delivered her second child. They didn't know until after birth that he had trisomy 18. He ended up living for 8 beautiful months. Just one example of the miracles that can happen. How are things going with your friend's little one?

[Marcus Momma]

I will be praying for her and her family.

[KEA's Mom]

Lisa,
My friend stopped having ultrasounds about 2 months ago. They were so upsetting and at that point the baby was fairly small so they had trouble diagnosing anything positively. It looked like there was a heart issue but they weren't sure. She girlfriend's growth is somewhat on target--she's measuring a few weeks behind I believe. The doctors really haven't discussed any "living past the hospital" scenarios. It's an advanced medical center so they certainly see there share of issues. I don't know if they haven't seen these babies make it out of the hospital but they have given them no hope. So, it's a miracle that we need. Does anyone know if Trisomy babies generally deliver early? She's got 5.5 weeks to go but she's been really not so great these days and I was hoping it wasn't a presursor to her labor starting.
Thank you for asking:)

[Lisa Kammel]

It has been a long time but I don't think that Jean delivered Nicholas early. He didn't have many health problems at birth but they knew something was wrong because of his hands, ears and face showed classic signs of trisomy 18. It is actually hurts talking about her because when she was 7 months pregnant with her 4th child ( a girl after 3 boys) she died of a brain anyerism. She was only 33 years old and her little girl Danielle died too. They were laid to rest beside Nicholas. Maybe I should't have included this but thinking about her now I am fighting the tears. We were close friends and she was the first friend I would tell when I was expecting. She died in May 2001 and I became pregnant with my daughter a month later. One morning I woke up because of a dream. She came to me in that dream so I got to tell her I was pregant and we celebrated together. After waking up I had the most warm feeling. The only thing that I can explain is that she came so I could tell her my news. To this day I feel like she was really there.

[KEA's Mom]

Lisa,
That's beautiful. Thank you for sharing that. I'm so sorry for your loss. I agree with you about your dream--that's wonderful and I too think she was there with you.
Take Care,

[motherofthree]

Because my mother carried to I believe nearly 43 weeks before induction, it was always my understanding that it was common to carry babies with T-18 past the due date. My brother always measured very small for his gestational age and was very small at birth. I'm not sure if this is the truth, though, or just my perception because of our individual experience. Is your friend scheduled for an induction or c-section?

[KEA's Mom]

No, she's not. She's decided with the dr to see if labor starts on it's own unless she winds up overdue. I can't imagine how she feels because I feel like I'm waiting for a bomb to drop. The baby is safe inside her at the moment and we just don't know what the future brings.

[Owen-n-Andrew's_Mom]

I am almost 30 wks along with a baby boy that most likely has T18. We just had the amnio yesterday, so it'll be a few days before we get the results back. From the stories that I've read and my own experience - it seems that how the baby's chromosomes manifest into physical abnormality / difficulty varies widely. In my case, I have too much amniotic fluid which puts me at increased risk for delivering early. (Too much fluid can make your body think that you are more pregnant / further along than you actually are)

You are such a wonderful friend! I have been pouring over several websites to get ideas / thoughts to make my own preparations... I'm sure your friend has probably done the same. Doing anything beyond being caring and supportive, will probably bring tears to her eyes and a deep gratitude to have such a wonderful friend. My thoughts are with you & your friend.

[KEA's Mom]

Thank you. My thoughts are with you as well and I hope for the very best possible outcome for you and your family. My plan has been to create a group of things to welcome her baby girl and to capture some memories of her. She hasn't been able to prepare for her--I think she's just paralized by her emotions and doesn't know what to do. I really need to go and and gather these items--I just haven't felt brave enough. I haven't been in the baby clothes section since before my daughter was born. I'm working with HAIN through Mary Glynn to create a gown for my friend's daughter, should it be needed. What will be will be but I feel the need to do anything for her that I can. Everytime I see her, I rub her belly--she's probably ready to shoot me. I just can't help it--I love to feel her round belly knowing her daughter is safe inside and I feel some kind of connection to my baby through hers. I can't explain it.
I will be praying for you and I hope you keep us updated on your sweet baby boy.
God Bless,

[AngelJazzysMom]

It has been quite a while since I have been able to check this website out without getting extremely anxious inside and maybe there was a reason why I checked it out tonight. I can only give my honest opinion on this discussion since we found out about Jazlyn's most likely unfortunate outcome on my 20 week ultrasound. I must say that being pregnant again I now keep thinking to myself all of the things that I know will be used if something unfortunate happens to this baby too. I would personally think that a small amount of clothes would help since the not knowing if he will be able to survive for long or not and as much as I hate to admit this even for a burial garment if need be, atleast she will have choices. Also film being disposable cameras or a digital camera just so she can capture as many memories as possible along with a photo album to store them in. After Jazlyn passed away I bought a small wooden box for a memory box so one of those may help. Please let me know if any of this did help as with Jazlyn's second angelversary arriving very soon I don't know if I am just rambling on at this point or am making sense. :o

[Patty Patterson]

Kristen - I shot a Trisomy baby that wasn't expected to survive birth and he lived for 12 days. He spent one week at home with his loving parents and they cherished every moment they had with him. His mother opted for a c-section as that would increase his chances of being born alive - and his family was so grateful that he did live for a little while. The memory of his time here on earth will last forever.

And yes - trisomy babies often come early. I think this baby was about three weeks early. He was scheduled for a c-section a week or two before he was actually due, but he didn't make it until his scheduled date.

I think he was trisomy 13 and not 18, but he was a blessing - even if he was only here for a short time. He definately make me look at life in a whole new way and I'll never forget the amazing strength of his mother.

[KEA's Mom]

Thank you everyone. Due to the graciousness of Mary Glynn and Cheryl of HAIN, I have a beautiful gown, blanket, bonnet and necklace to give to my friend, should they be needed. I've been spending more time with her lately than usual. In part because I need to--I want to be near her and my hands are on her belly all of the time. I've felt her precious girl move many times. In part I'm with her because regardless of the outcome, she's going to be a different person after her daughter is born. She's so nervous and feels so helpless. She has a deep faith and that has helped. Feeling God's presence in this is what gets her through. Her due date is 23 days away. I will keep everyone posted and I appreciate any prayers you can send her way.

[Patty Patterson]

Kristen - you are being such a good friend. I know it's got to be hard to watch your friend go through this - and many people would avoid her just so they don't have to deal with it. But - just by being there I'm sure you are a great comfort. Just don't forget to take care of yourself, also.

And I'm glad the mother has deep faith. Faith can get you through things that are otherwise unbearable. My prayers will be with you, the mother and this sweet baby.

And do keep us posted!