dealing with sibling death - update in edited #1

[EmilyGF]

We learned in March that our baby due this summer has Trisomy 18, which gives him a pretty bad prognosis (50% die within a week of birth, 90% die within a year, even with extreme levels of intervention). 

 

I've realized that my goal is for him to come home, live with us as much as he can, and, ideally, be with people who love him when he dies, whether that is at 5 days or a few years.

 

Now, I have four kids, 9, 7, 5, and 2. I personally think that knowing you have some mystical sibling at the hospital who is dying is freakier than having a sick baby at home. However, I think I am sort of counter cultural because some people from the hospital think I'm a bit nuts... ("Have you considered your older children?")

 

Have you had to help your children deal with sibling death? We've been really open with the kids from the beginning. This isn't a shock for them. If I knew of a Christian grief counselor for my kids, I would have them meet with one, but I haven't located one yet...

 

Edited 6/21/14

Baby Joey was born yesterday at 36 weeks. He lived for 90 minutes and was held by his dad, siblings, and me. He died in someone's arms (not sure whose). I'm so thankful that my children were able to see him alive. We ended up having amazing support at the hospital. 

 

Emily

 

 

[Twigs]

I am so sorry. I have no advice, only  :grouphug:  :grouphug:  :grouphug:

[PrincessMommy]

I do not have experience, but I wanted to say that I don't think you're nuts. Many hugs as you traverse this sad path.

[umsami]

:grouphug:

 

I have no experience, but I think if I was in your position, I'd do the same thing.  I think because you've been open with them, it will be easier.  Some hospitals or hospice groups have children's hospices which might have some good resources.  

 

 

[Slartibartfast]

I am terribly sorry.

 

The nearest children's hospital may be able to help you find someone.

[Joanne]

I will be back later, when I am not on a phone.

[Guest]

:grouphug:

 

You are not nuts. I would do the same thing.

[liber]

It is what I would do too. I think as a culture we have divorced birth and death from the everyday rhythms of our lives.

[East Coast Sue]

(((hugs))). You will likely get much wisdom but I couldn't read and not offer my heartfelt concern for you and your family. I don't have first hand experience.

 

I had a friend with a baby (trisomy 18 diagnosis) and they had a couple weeks at home as a family.  They expressed that it was a peaceful, somber, and even somewhat joyous time. They also expressed the sentiment that some thought it best to keep the baby in the hospital and not at home. For them, being at home was best and they had no regrets. Lots of pictures and memories even though it was a very brief time and full of grief in the midst of joy.

 

(((more hugs)))

 

You will be in my thoughts and prayers.

[Slartibartfast]

I missed that about them thinking you are nuts. That is terrible. I don't think that is nuts at all. I would do the same.

[Guest]

I am so sorry your baby has Trisomy 18.

 

My third child was a full-term stillbirth. She died in labor due to placental abruption. My two older children were 5 and 3 at the time. Some aspects of my situation was different, because it was unexpected and the children did not get to have a relationship with her. In your case,

I do agree with your logic. It would help your children fully understand that this is their sibling. Of course, the sorrow of that is they are also experiencing the loss more completely than if it was a "mystical sibling at the hospital."

 

There is no easy way to walk the road that lies ahead. I am so sorry.

[Katy]

No advice, but I would do the exact same thing.

[maize]

I would want to do the same as you. One of my cousins had a rare genetic syndrome and died at 15 months. While she was alive the family tried to make life as normal for her and her siblings as possible. Fourty years later they still tell the grandkids stories about "aunt S[•••]".

[El...]

:grouphug: :grouphug: :grouphug:

[hjffkj]

My parents had to deal with the death of a child twice.  Once when my older brother died at age 2 of spinal meningitis and the other time when another brother died of thanatophoric dwarfism, an almost always fatal form of dwarfism, 100 days after he was born. I was not alive during either death but 5 of my siblings were. So my mother might be some help to you.  If you pm me contact information I can relay it to her. 

[Catwoman]

I'm so sorry about your baby. :(

 

I can't imagine not bringing her home, either.

 

You may not be able to give her a long life, but you can give her the happiest life possible and let her know how much she is loved. :grouphug:

[Rosie_0801]

:grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:

 

Authentic living is good and valuable.

[UmMusa]

You and your husband will feel most at ease doing what you feel is right whatever it might be.  I second the suggestion to call Children's Hospital and seek a counselor.  I pray for ease and patience for you and your family.

[Melissa in Australia]

(hugs)(hugs)(hugs) I would do the same thing

 

[Truscifi]

:grouphug: :grouphug: :grouphug:

 

I'm so sorry. I think you should do what feels right for your family.

[DawnM]

I think you are doing the right thing.

 

We have friends whose baby died the same day he was born and he had Trisomy 18.  I know he died in the hospital, but I don't know if their plans were to bring him home if he lived for a while or not. They have never talked about him and I assume it is because it is very painful. 

 

I am so sorry.

 

Dawn

[ErinE]

:grouphug:

 

I think you are doing what is best for your family. Hospitals can be very frightening for children. Bringing your baby home lets them love and hold their sibling for however long you have together.

[Cakes]

I also think you are doing the right thing. I am so sorry and your family will be in my prayers.

[Tammi K]

Hugs to you and your family.  I pray your are comfortable and supported with what ever decision you make. :grouphug:

[idnib]

In my former life I spent some time working in a genetics lab, extracting and taking photos of chromosomes and pasting them onto sheets, alerting counselors if something was out of place, most often an extra 21 chromosome but also sometimes chromosome 18 or Y or other variations. 

 

I was not involved in the counseling aspects when parents would come in, but I do know from working there with counselors that a fair number of parents kept their babies and brought them home. For some of them it was a difficult decision, for others, very clear. But it was not unusual and never did anyone think it was "nuts". It was one of several options, all valid, and in my time there I saw people avail themselves of all options with no judgement from us.

 

:grouphug:

[BrittanyM]

I would want to bring my baby home as well. My situation was very different, but my son was still born last year at 33 weeks due to a placental abruption and my kids were 4 and 2. We were very honest with them and when he was born they came to the hospital to hold him and see him. My 4 yr old DD did not understand fully until we came home without him what had happened. They often talk about him and are much more frank about death as a result (two of their great-grandparents that they were close to also died within the surrounding 6 months).

 

I am so so sorry for your family, I will be praying for you all!

[Liz CA]

I would do the same thing. I think children need to know that life begins and ends at some time. I was less sheltered about death when I grew up than dh. Since you have already told your children that in all likelihood this baby will be ill, they are somewhat prepared. There will be lots of talking and explaining and if your baby is ill and dies, they will need some guidance and permission to grieve and express their grief in different ways.

 

It won't be easy but it is rarely travel on the easy road that brings unforeseen treasures.

 

ETA: It does really not matter what hospital staff is thinking. This is your child and your family. This baby will be happy to be at home with his or her siblings until it is time to go.

[Tap]

I think you and your husband have to follow your hearts on the matter. (((hugs))) As hard as it is, look at some websites or read a book or two about memorials for infants lost during pregnancy or as young babies.  There are some beautiful ideas out there, and having a memorial can help your children become part of the grieving process, not just bystanders.

 

 Educate your children as best as they can understand. Try to build a support network now for them, so you have extra caregivers for when you will need them. Integrate overnights if you are comfortable, so they have a place to go if you are in the hospital at certain times. We had a baby with Trisomy 18 (lost at 22 weeks in utero) who would have been between our two oldest children.  One of the hard parts was people who didn't know the story, but knew I was pregnant, asking about her, after we lost her.  We got used to it as parents, but it was confusing for our son to be asked by people who didn't know we lost the pregnancy, how he liked having a 'baby sister'.  So, I guess prepping them for the idea that not everyone will realize all the details, may help the children.  Ds was young enough that we could step in and answer for him, but your older kids may need to either have an answer prepared (hard to come up with on the spot when you are full of emotion) or know to just divert any questions to you.  Do some extra family things now that you won't be able to do once the baby is here, in case the baby has round the clock needs (real vacation, quiet games as a family, etc).  

 

One of the hardest things for me was tearing apart the nursery and getting rid of everything. We found out two or three weeks before she died. Had we known ahead of time, I would have only had the bare minimum needed to bring her home and bought items as we needed.  But we had the whole nursery set up, decorated and a closet full of clothes. Part of the grieving process for me, was giving everything away that I had associated with her.  Not in a hateful way, just that I didn't want the memory attached to my baby items. When we had dd15, two years later, we had to start from scratch, which was hard financially, but was a fresh start mentally. 

 

For grieving, one of the best pieces of advice is to realize that you and your family members will grieve at different times.  Our genetics counselor told us that women typically grieve for the baby they lost.  And grieve hardest right after the death and within the first year. Men grieve most at the age when they imagine the baby at.  So, if you husband loves playing with a baby and imagines the child at that age....it will be the time he grieves the hardest.  If he loves the toddler years, that is when it will hit him hardest.  And so on...   I don't know if that holds true for siblings or not.  I know both senerios were very true for dh and I.   Dh took care of me through my grief right after deliver and through the milestones of due dates.  Dh, finally hit a wall and started grieving hardest at the time she would have been 2 years old.  Just out of the blue one day he started talking about her and went really though the grieving process then.   DS was 2yo when she would have been born.  When he was 4yo, he started talking about our 'angel baby' (his own words).   Kinda freaked me out, when he started talking about her, but then it made sense when I remembered what the counselor said. 

 

 So, sorry that your family will lose a baby they already love.  (((((hugs to you all))))))

[CAMom]

I wish I didn't have experience to share with you. And, I wish you didn't have to live through this.  :grouphug:

 

My older kids were 8 and just about 13 when their sister died. We were never able to bring her home from the hospital as her condition was such that she could not survive unless on a respirator. She was awaiting open heart surgery when she died.

 

We were all at my daughter's bedside in the hospital when we made the decision to remove her vent and she died within about 2 minutes. It was definitely traumatic but I know my kids are thankful that they were there.

 

In your situation, I think I would want to bring the baby home. As mentioned above, there are children's hospice services. I had a friend use hospice for her baby with the same condition and it makes something that can be scary less so. Hospice will also have lots of grief and counseling resources.

 

My kids did pretty well at first. I had to tell them that I would cry every day for a long time and that it was OK. At one point, I overheard my ds (then 13) crying in his room. I discovered he thought his sister had died because he hadn't prayed hard enough for her. :crying: 

 

My dd had a harder time. About a year after the death, she started to develop some irrational fears. We had a couple of other deaths of significance over the next couple of years. Dd ended up developing an eating disorder and we got her counseling as soon as we were aware. So much of it was related to her grief and her counselor was amazing. She is now doing very well.

 

I think it's important to let kids see what's real. Being a part of the cycle of life is an important lesson. Just be aware that as your surviving kids grow and mature, they may need to process the grief again from their new perspectives. 

 

I am so sorry your family has to go through this. :grouphug:  

[mom2samlibby]

I'm so sorry to hear about your baby.  I don't have any advice, but possibly this blog will help, if you haven't already seen it.  Todd (from Selah) and Angie Smilth, had a daughter with Trisomy 18 (I believe, it's been awhile since I've read her story.)  Now, that I think about her story some more, I think it was hydrocephelis.  They had 3 other young girls when Audrey was born.  She shared quite a bit of her story on her blog and has since written a book about how they handled Audrey's short life on earth.  http://angiesmithonline.com/2008/01/the-beginning-of-the-story/

 

((hugs)) to your family.  

[busymama7]

I think you are doing the right thing, your kids will benefit from it and it wil be a special time for your family.

 

Next week it will be ten years since our daughter was still born at term. She died prior to labor and we chose to birth her at home as previously planned. Our children were 2,4,5 and 7. They held her and got to know her as best they could. They said goodbye, carried her casket and flowers and were as completly involved as they wanted. I don't regret it at all.

 

Pm me if you'd like to see the video I made about her birth and funeral. It has many pictures of the things my kids did and how they were involved.

[Susan C.]

So sorry about your baby. I do know of a family that did exactly what you want to. Their daughter lived a few months.

[Maplinmum]

I am sorry that you are going through this, I think that you are following the best path for your baby and children. It is important that children are involved when a sibling dies, they have the right to have their own memories of their sibling.

 

A good book for discussing death with young children is Beginings and endings with Lifetimes in between.

http://www.amazon.com/Lifetimes-Beautiful-Explain-Death-Children/dp/0553344021/ref=sr_1_1?ie=UTF8&qid=1401949067&sr=8-1&keywords=bryan+mellonie

We use this book for siblings on the PICU where I work. 

 

Another resource is https://www.nowilaymedowntosleep.org 

They will take professional photos for you of your baby, free of charge.

 

[Mama Geek]

:grouphug: We would bring the baby home as well.

[Donna]

:grouphug:  In your place, I would bring my baby home too. So sorry.

[Harriet Vane]

:grouphug: I'm so sorry.

 

I would want to bring the baby home too.

 

A friend of a friend faced this as well. They brought the baby home, where she lived for several months.

 

:grouphug:

[Scarlett]

I am so sorry. And I don't think you are nuts either.

[*Lulu*]

(((Hugs)))

 

No words of advice.

 

Just know that you and your family are in the thoughts and prayers of many.

[ashfern]

:grouphug:  I would do the same thing. My cousin is about to have a baby with a hole in his brain. He has 2 genetic conditions and it is so rare that this is only the 2nd baby that the genetic counselors have seen with this condition. She's living with my aunt and the genetic counselors have been really great. There are lots of resources that they have made them aware of. 

[trulycrabby]

We would bring the baby home. :grouphug:

[Insertcreativenamehere]

My 2 yo son has Down syndrome (Trisomy 21) and was extremely sick and in the hospital for 180 days in his first 18 months. There were several times when we almost lost him. He is home now but has complex medical needs (including a trach and g-tube) that require nursing care in our home 16 hours a day. Our local children's hospital has a Child Life department that did some training with my 3 older children (7, 5 and 2 at the time) to help them better understand their brother's medical needs. That was helpful, I think. Every sibling responds differently. My middle son (who was 5 at the time) responded with a lot of anxiety and depression and I did take him to a Christian counselor. It was not very helpful. What has made a difference for him is giving him more stability through extra time with the adults in his life -- which led to us taking him out of school to homeschool. All of our kids have learned more compassion, love and acceptance from their brother than they would have learned without him. 

 

There are lots of kids with T18 who live longer than expected. If medical intervention is needed in the form of a trach, vent or g-tube at home, it's doable. Our son is a joy and a blessing to all of us and the medical stuff does become routine at some point, even if it is hard. I think it is best to bring your little one home for as long as he or she has on this earth. I'm sorry and I wish you only the best. 

[jhschool]

I think bringing your baby home to meet his family is the right thing to do.  I would do the same thing.

The baby will know his family and feel loved and cared for.

Your other children will be blessed by knowing their baby brother.

God bless you and your children.

I will pray for you.

 

 

[Night Elf]

:grouphug: I don't think bringing the baby home is nuts at all. I'd want my family together too.

[Amy in NH]

IMO, you are doing the right thing. 

 

Here's my anecdote:  My Dad's mother died in when he was only 7 or 8 years old.  He was the oldest of three children at the time.  She wrote him a note about going into the hospital to have a baby... take care of your siblings while I'm gone... I love you... and never came back.  The baby didn't come home either.  They both died in the hospital and my Dad never saw either of them (again).  Fast-forward 63 years and he just went to city hall a couple of months ago to get their death certificates.  For all of these years he needed closure on the loss of not only his mother, but a sibling he never knew.  He grieved his mother AND the baby for all these years, and had suspicions that his stillborn sister never actually existed or that she may have lived and been passed on to a relative for upbringing.  He finally feels at peace now over the loss that happened so long ago. 

 

My condolences on your poor prognosis.

[Kathryn]

I'm so sorry. I, too, would bring the baby home. I'm aghast that hospital staff would negatively comment on your desire to do so. I really can't imagine anyone I know NOT doing so.

[Chris in VA]

:grouphug:

I don't know what I would be capable of doing, honestly, but if I could, I would bring the baby home.

 

You have gotten wise advice. I just want to say I would also try to cherish this time when your dear baby is still inside you. <3

[stephanier.1765]

I don't have anything to add to the wonderful advice and encouragement above but I did want to offer hugs. I am so sorry.  :grouphug:

[Annie G]

I'm so sorry. 

 

But I think planning to bring the baby home is a good plan.   :grouphug:

[Haiku]

I'm so sorry. I think you are doing the right thing for your family.

 

In two weeks I will be a counselor at a hospice camp for grieving children. I suggest you contact hospice about their services for children.

 

Again, I am so sorry.

[PeachyDoodle]

I wanted to express my condolences as well. I think you are making a wise decision. I believe I would want my baby at home with the rest of us too, for whatever time we had.

 

Prayers for you and your family as you walk this road.

 

:grouphug: