This is the story of our precious baby boy, who was diagnosed prenatally at
17 weeks with a fatal chromosome disorder called Trisomy 13. Although
Jonathan's condition is considered "not compatible with life", we desired to give
him every chance at life. Our prayer is that those who are touched by our story
are drawn to God, who is Life Himself. John 14:6

To start at the beginning of our story, click here.


fairy tale interrupted: the first week

it was Monday, june 22, 2009. that night/early morning i did not sleep well. i was up at intervals starting at 4 am and finally gave in and got up at 5:30. i’m sure it was because of the excitement of having our routine ultrasound that morning in which we hoped to find out the gender of our 17 week old baby. my appointment was early, and of all mornings, kate decided to sleep longer than normal. i set out her breakfast and then paced around until i finally went in to wake her up. she is so adorable when she sleeps. i stood there beside her crib for a few minutes, caressing her back before she finally stirred. she popped up into my arms and rested her head on my shoulder and we held each other for awhile. my morning was off to a wonderful start.

fast forward a couple of hours. it’s a boy! i’m in shock. i really thought i was having a girl. and then our doctor sees something on the ultrasound that caused her to refer us to a high-risk specialist, just to make sure there was nothing else going on. our hearts became heavy, but we were still hopeful that our son was going to be OK.

by wednesday morning, our hopes for a normal, healthy baby were dashed when one “marker” after another was discovered during our level II ultrasound, namely several “major structural heart defects.” i had an amniocentesis done that same day and learned the official results from that on Thursday, only a day later.

our worst fears were confirmed. the diagnosis is Full Trisomy 13, an extremely rare chromosome disorder which is not compatible with life outside of the womb. in fact, it is the worst condition a fetus can have and still somehow live and grow in the womb. if he survives the pregnancy, he is not expected to live long after birth. we were told by the genetic counselor that in our case, it probably wasn’t a hereditary condition, it was more of a “random” occurrence (up to 1 in 25,000) that took place at conception.

needless to say, it was the worst week of our lives. we went from being excited to finding out what we were having to realizing that we weren’t going to have a happy ending for now, in fact, we were in for a very rough road ahead.

what happens now
we believe that God alone is the giver of life and it is He who takes it away. when we told the high-risk specialist that there was no other option for us but to continue the pregnancy, he assured us in our decision and told us that every couple that he has ever known in his practice who has made this decision, were blessed and found much joy in the end result. regardless, we are trusting in God’s plan and provision for us. if He chooses to bless us through this, then that is great. either way, we know it is the right choice for our child. our prayer is that we would be able to hold him and to love on him, if only for a few moments.

we have many follow-up appointments scheduled in which we will find out more information each time we go. because our baby is so small now, the size of his heart is only the size of the fingernail on your pinky finger. it’s hard to predict exactly what is going to happen until the baby grows in size and the doctors can see it better via ultrasound. we have decisions to make as to where we will deliver, what is best for our baby, and so on. we also have funeral arrangements to make. never in my wildest nightmare did i ever think i would be doing something like that for my child.

how we are doing
some days it doesn’t seem real. both greg and i have said many times that we’re ready to wake up from this bad dream. watching that fateful ultrasound while it was being conducted last week made the situation seem distant and outside of me, if that makes sense. at that moment, it was taking place on a computer screen, not in real life. but when i feel the baby kick or move and it snaps me right back to reality. he is here. he is with me. this day may be all that he has for now. no matter how bad of shape he is in, i still have to take care of him the best i can and love him like he was perfect. he has no other mommy but me.

so….we are doing OK. we have our moments of disbelief, of extreme sadness, of numbness. but most of the time, we are completely submitted to trusting that God will bring us through this just fine, if not stronger than ever. it is not something that we can do on our own; we know we are being uplifted all day long in prayer. our new reality is that we cannot change the circumstances we’ve been placed in. so our choice in how to react is to make the best of them: to celebrate the life of our son, no matter how short, to be thankful and to praise God for his blessings and provisions, and to pray that others will be drawn to the Lord through the life of our son.


  1. I'm crying now - sadness for you but also joy for the work the Lord is already doing in you and Greg.

  2. i am so sorry lauren. i am crying and hurting for you too. i don't know what you are going through, but as a mom, i know the love you have for your children and my heart aches for you. this little boy has the best momma and it does sound like God is already doing so much in your lives and I'm praying that through this situation you will grow closer to Him and draw others to know Him more too

  3. Thank you for sharing this with us my friend. I know that it is not easy to tell the whole world what you are going through, but I know that God will be glorified through your journey. We love you and are praying for you all. Jonathan couldn't have been blessed with better parents. Love you so much.

  4. I am so sorry to hear this Lauren. I hope that you guys can make it through this tough time. I can relate to you in some ways, having a child with an illness is the most challenging thing that a parent can go through. My thoughts and prayers are with you.

  5. This is a beautiful story and will have a beautiful ending. I know you and greg are strong in your faith and God will hold your hand in His.

  6. Lauren my cousin was born in late 2001 with this. Boys rarely make it thru to birth and he was early. But he also lived Nov 1st til Febuary. That's unheard of! My aunt and uncle along w her 2 older boys and her one she's had the following year all think it was a blessing that we got to spend that short time and love him only to let him go. He taught us things we needed.
    My other friend only held hers for a few seconds. and others i know were simply stillborn. These still felt touched as Heavenly Father loves us and these sweet spirits are to give us blessings thru the trial.
    know i'm praying for you & your family!!!
    Love, Stacie

  7. Lauren- My heart breaks for you and Greg. I love your attitude though and God is already using you and this experience more than you know.YOu will continue to be on my heart and mind. I will be lifting you up in prayer. Lots of love!

  8. Many prayers for your family from Atlanta.
    “I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:14

  9. God will walk with you hand in hand and He will always be by your side. Love and prayers to you and Greg and Kate and Jonathan.

  10. Dearest Lauren, I want to let you know that I am praying for you and your sweet family every day. You are an amazing STRONG,STRONG woman and GReg, Kate & Jonathan are blessed to have you. I am praying that God will continue to flood you with His Strength, Power, Peace & Love.I'm like you in that I love the picture of Jonathan sucking his thumb!

  11. The same happened for me :-(
    It is the worst thing that ever happened in my life...never have I cried soo much before...
    My son went to God much earlier than her was supposed to.

  12. Your video about Jonathan is the most precious one I have ever seen. It pulled on my heart strings and my eye water. I am so sorry for your loss, my mom went through it 6 times, so I am familiar with the emotions this brings.

    I checked out your site because somebody said you had some precious quotes and I am making quote brushes in Photoshop to use for the photos I take of babies like yours who loose their life soon after birth. Please let me know if you mind me doing this. I am a photographer with Now I Lay Me Down To Sleep, NILMDTS.

    My email is if you would please let me know if I have your permission and if you have a special area with these quotes or if they are spread around your blog, please let me know. Thank You and God´s blessing over your other children.

  13. I am so sorry to read about Jonathan, but glad you would see him someday soon. I believe that is the greatest consolation any bereaved parents can have. I totally agree with your response to dealing with our baby loss, thanking God and our pain being an opportunity for others to know Him. God bless.

  14. I came across this page looking for quotes because after two years I have decided to imprint my son's hands and feet with a quote on my body. My 3rd child was born at 16 weeks from placental abruption. A couple weeks before that I was sent to a high risk specialist because they thought our son had trisomny 13. I had admire your courage and strength to continue on with your pregancy. After two years I still think about it on a daily basis...wishing that I could move on.