Complete Trisomy 22
On Tuesday this week, our genetic counselor shared with us what was detected in our little baby girl. Yesterday, the confirmation came in. She has complete trisomy 22.
Complete or full trisomy 22 (non-mosaic) is a very rare chromosome disorder that occurs when every cell in a body has an extra chromosome totaling 47 rather than the standard 46. The extra chromosome is a 3rd chromosome 22 instead of the regular pair of two. This disordering of the genetic code creates major malformations all over the body and is considered to be inconsistent with life. Almost all cases of complete trisomy 22 end in miscarriage, as it is the 2nd highest finding for miscarriages.
Approximately 1 in 40,000 babies with complete trisomy 22 make it to a live birth. Yeah, those are the kinds of odds that our daughter is carrying and facing right now. Our doctor says in one week, our daughter will be the first child with complete trisomy 22 to make it full term at Abbott Northwestern Hospital. Making it to a live birth with complete trisomy 22 is so rare, that there are only about 30 documented cases in the last 30 years. Of those documented live birth cases, the average life span is 3.5 days. The longest life we’ve heard of for a baby with complete trisomy 22 was the tender age of 6 years old.
All of this news feels really heavy right now. We appreciate your prayers during this time.
Heavy. Our hearts are heavy for you as we lift you up in prayer to the one who knows the beginning to the end. Hugs.
May God be your stream in this desert. May he be sweetly near in this time to mourn. And may he give great grace to hold loosely all of his previous gifts except the gift of himself. Love and prayers.
We are praying for you every night.
Sonja and Jacob,
Our thoughts and prayers continue for you and family. We are thankful for the care you are receiving and the support and love you feel from your family and friends.
May God’s peace and loving arms surround you and hold you strong in His care.
Love, Lois and Roger
I’m praying for you all. May God’s comfort be your strength.
Dear Jacob, Sonja and family,
My heart breaks for you all. You continue to be in our prayers. Hugs, Marty and Jane
Dear Jacob and Sonja & kids – we are so grieved to hear this sobering news about your dear little girl. There is just no easy way to wrap your mind around the fact that your child will be leaving this world so soon. My heart breaks with you. I know that God has written each day of her dear life in His book, and that nothing about her life, no matter how brief, will be in vain or wasted in His inscrutable providence. She is precious. You are and will be in our hearts and prayers!
Karen Stark shared this with me after Matthias died and I’ve never forgotten the words:
God is God; he sees and hears
All our troubles, all our tears.
Soul, forget not, ‘mid thy pains,
God o’er all forever reigns.
Fear not death, nor Satan’s thrusts,
God defends who in him trusts;
Soul, remember, in thy pains,
God o’er all for ever reigns.
For this life’s long night of sadness
He will give us peace and gladness.
Soul, remember, in thy pains,
God o’er all for ever reigns.
Dear Sonja, Jacob and family,
I know receiving this news of life limiting condition for your precious baby is hard. I have been there so I know. I am so sorry for all the unknown and the grief. I will keep you all in my prayers. Here is a link to some support, on making the most of your time with your baby and preparing to meet and say goodbye. I would have loved to know about this while I was carrying LiLy. http://allthatlovecando.blogspot.ca/. Also, here is a beautiful book by Angie Smith https://www.amazon.com/Will-Carry-You-Sacred-Dance/dp/080546428X. There is also a free photography service called “Now I Lay Me Down To Sleep” that you can contact, had it been available here, I would definitly have asked them to document Lily’s life. Praying for peace, comfort and strength from above. If you need or like to talk, here is my gmail: famillel2012@gmail.com Much love xx
Heavy is a huge word! We have been praying and will double it up! Wonderful to hear how you have been cared for since arriving! I kind of think if is God’s gift to let you see her and hold her rather than an early miscarriage. But then the extra time dreaming of a new baby girl now is so overwhelming. We just trust the Lord is carrying you, holding you in His arms, giving the strength for this, grace, mercy, peace. Love you all so much!!!
Jacob & Sonja, Our hearts are saddened by the road you are now travelling…we know from our own life experience what it feels like to carry and deliver your baby and then hold her tiny form in your hands,knowing she is not really in yours, but is being welcomed and held by the tender hands of Jesus. You are both in our prayers as you await the fullness of her days. We will continue to pray for His comfort and peace for you and your children in the days ahead….
Sonja, Jacob & family,
I told our children the other day that when we pray constantly we can imagine that a constant stream of butterflies are flying up from our hearts, our souls. There are an amazing amount of butterflies flying for each of you… for your little girl. Hugs.
I have no perfect words. I take comfort in knowing that the LORD is with you and carries you all close to his heart. I continue to pray.
Sweet Broten Family,
Our hearts are breaking with you but also hoping with you. We are praying for you all that His peace that passes understanding enfolds your family now, that moments burst forth in the mist of this roller coaster of sadness and suffering that are unmistakably overflowing with God’s amazing grace, miracles and full of His joy, that you can look past ‘this cross’ and find the comforting arms of our Creator who loves you all so dearly and chose you to gift with this precious soul to guard, to love and carry in this world for however long His book has written. It is a hard but beautiful calling you are traveling through. I can’t stop the tears right now and I’m not sure that my words are communicating enough but please know you are not alone especially for those of us who have gone before you and gave our precious gifts back to Jesus long before we ever wanted, in this we are praying you through and still praying for a miracle in the body of your baby girl. And as it stands she is a miracle right now surpassing all odds. Cheering you on Baby Girl Broten! Naomi is absolutely right, call Now I Lay Me Down to Sleep they are wonderful, we have beautiful photos of our Baby Ian that are a treasure to us because of what they do. There is a chaplain, Peggy Good, at the Mother Baby Center at Abbott in Minneapolis who was a precious person to talk with while we were there as well. Blessings, our Mama and Daddy Hearts are praying, Rachel & Christopher Stone
rskime@hotmail.com
Also we kept a Caring Bridge Site while we were journeying with our Baby Ian. You are welcome to read it.
https://www.caringbridge.org/visit/babyiangary/journal/index/0/0/asc
I think that would get you into his journal.
-Rachel
We are so sorry to hear this..Our prayers are with you all…
Tears rose as I read this news about your precious little girl. Words are so very inadequate at a moment like this, yet we all need the words. I weep with you…grieve with you…and rejoice with you that as you say “hello” and “goodbye” to this precious little one, you will release her to the arms of the one who loves her far more, and with the hope that one day you will be with her again for all eternity! There is the joy in the midst of the sorrow. Much love to all of you, and many prayers will rise through these coming days.
Our hearts are heavy as we read this news. So very sorry… We are praying for your strength and for much mercy and grace as you walk through the days and weeks ahead.
What a heavy weight. May God’s peace comfort and minister to each of you.
I’m so sorry. Your little one is so loved, so treasured. Her life may be short, but the length doesn’t lessen the value and contribution she makes. It is dense and thick, which makes the pain intense. Praying for you as you value her fully and walk through the accompanying grief that is heightened because of your deep love and knowledge that she is knit by God, made in his image.
Much love to each one of you,
Abigail
We live across the street/park from Abbott. I assume Sonja is at Abbott until delivery. Please call me if you need anything! 612-279-2765.
Melanie
Sorry That number is 612-270-2765
Sonja and Jacob – I am so glad that you were able to return to the states so Sonja would have great medical care but so sad that you are going through a pregnancy where your baby girl will go home to her heavenly father rather than
join your family. I know your hearts are heavy and I ask God to keep all of
you surrounded with His love. Your faith and the prayers of so many will mean
so much to you in the coming days. May God continue to bless you and the children. Thank you for keeping us informed.
My prayers are incessant for you and your family as you anticipate the birth of your baby girl. I love you dearly, please let me know how I can help. ❤️
Praying!
Praying the Lord Jesus Christ would be your refuge and strength, your ever present help in trouble.
I remember the days my daughter was kicking in my belly, filled with life, yet we were given similar life-limiting news (trisomy 18). Praying God would give you strength to savor your daughter’s beauty, and eyes to see it. She is a precious gift to you.
Oh, Father of mercies and God of all comfort, would You draw near and do what no one here can do? Would You comfort, sustain, refresh, and give hope to this dear family who are bearing this gift from Your hand? We cannot heal this kind of hurt–but You know it, having given Your own Son, and You are able to transform the pain of this anticipated good-bye upside-down and inside out, for beauty, for life, for joy, for grace. Would You show Yourself in new ways to each one of the Brotens, and would you make Jesus beautiful to them and to many, many others through this journey. In Jesus.
Our love and prayers are with you and your family. We are praying through Psalm 46 – Our mighty God who is our refuge and our strength is also our tender, loving Father who gives life and breath, knowing this little one already. We know He holds her in his hands and is always present. May He grant you peace and deepened faith as you fix your eyes on our Him. We continue to pray with you. Thank you for sharing updates so that we may know how to pray specifically, to lift up your needs to our all-capable Creator.
Just coming to say you’ve been on my heart and mind a lot these days. May God continue to be your strength during this journey of grief.
Hey Brotens!
Just wanted to let you know we are still praying. You will never be forgotten! We pray for your entire extended family through this too–may you take comfort in the people who love you and have walked the long road back down the hill without their “Isaacs” and those who God has given to you as a blessing to support you as they prepare to say goodbye to a blessed granddaughter, niece and cousin too. One of our biggest prayers as parents is for our children to be used by God in mighty ways–that they will stay close to Him and honor Him and serve Him all the days of their lives. Your precious baby girl has already been used by God in MIGHTY ways. Though it’s not the answer to prayer that we desire, it’s bigger than we could have imagined.
As you brace for the worst, don’t forget that He is the Healer and His hand is so mighty and powerful that it could heal a tiny baby in the gentlest way. We petition the Lord for a miracle so mighty and powerful that it will be undeniably Him!