Chances Of Having A Second Baby With Trisomy 13

Dr. Greene’s Answer:

Melissa, quite a lot has happened since I wrote you last week. On Wednesday, I drove about an hour and a half to Santa Rosa, California to be present when my sister had a baby. She had had a dream pregnancy, but the baby was in a breech position. A cesarean section was scheduled for 7:45 Wednesday morning, and I was able to schedule to be there — as her brother, not her pediatrician.

As I was driving, Melissa, I remembered your sorrow. I hoped that another child would be able to have you as a mother. I reflected on what a miracle it is whenever a healthy baby is born. Pregnancy and gestation are so complex. Human life is so fragile and strong and beautiful. What a privilege to see a baby come into the world.

When I arrived at the hospital, three generations of Greene’s were gathered, tingling with excitement at the magic that was about to happen. We filled the waiting room. My sister and her husband had decided on Brandon Alan if he were a boy, and Brooke Michelle if she were a girl.

When the time came, I went into the operating room with my sister (along with her husband and parents). My job was the video camera, to record memories of one of life’s greatest moments.

Through the lens, I saw her perfect legs and bottom first. “It’s a Brooke Michelle, and she’s beautiful!” I announced. “Congratulations!!!”

Then the obstetrician cautioned, “She has a little cleft lip.” I saw my father’s face fall, and felt a chill in my own heart. Suddenly the moment didn’t seem perfect. I knew that modern cleft lip repair has spectacular results, but it felt as if a bubble had burst.

I rushed to the warming bed where the pediatrician was giving baby Brooke Michelle some oxygen. Was this some kind of nightmare? It looked as if she had trisomy 13!

Arrangements were made to transport Brooke to a university medical center. My sister (as is the standard practice when babies are transported) was left behind, a hollow loneliness replacing a lifetime of hopes and dreams.

As a side note, this practice of separating sick babies from their mothers is wrong. I can understand why insurance companies say that co-transporting the mothers “is not a covered benefit,” but my goal is to overturn this accepted barbarism. In my sister’s case, with much effort we were able to get her transferred an interminable day later. But back to more immediate concerns…

Within hours, the diagnosis was confirmed — trisomy 13. Dreams of her first tentative steps, her first spoken “Mama,” her playing happily in a park, her entire future, all vanished. This was a nightmare from which we would not wake up.

Less than a week ago, I wrote about a mom rocking her baby, knowing that he would die. Today I was in the rocking chair, holding my precious niece. She sucked on my little finger in rhythm with our rocking, cuddling in close. It was a moment that seemed at once endless and slipping away all too fast. The fullness of love and sorrow suffused my heart, and once again I knew that I would never be the same.

Looking at Brooke’s misshapen face, I recalled that all babies’ faces looked like hers early in development. It’s just that most continue to grow and change, and hers didn’t.

My children were introduced to Brooke that first evening, one at a time. Each one’s genuine response was, “She’s beautiful!” I love how they could see her preciousness and not be distracted by her looking different from other babies.

I drove back to see my sister later that first night, and along with everything else, I could see a searching guilt in her eyes. What had she done to make this happen? Was it something she had eaten? A virus she had? Was it the time that she had fainted?

No. No. No. Trisomy 13 is an extra copy of the 13th chromosome that slips in at the moment when the sperm and egg join. Nothing that happens later can change that unalterable fact. Most embryos with trisomy 13 do not survive to be born. Most who are born have mothers, like my sister, who took exquisite care of themselves — not who did something wrong.

Melissa, I am thrilled that your chromosome tests came back normal. This indicates that Quinten’s translocation began with him, a spontaneous event at conception. I do recommend meeting with a geneticist to go over together as much as is known about your family history. The geneticist should be able to give you the risk of recurrence for your specific situation. In all likelihood, the risk of having another baby with trisomy 13 will be extremely low. No other pre-conception testing is available, or necessary. After conception, you can know for certain by 16 weeks, using a combination of ultrasound, CVS, and/or amniocentesis.

When I wrote you last week, I wanted to say something about how trisomy 13 children live on after they die in the way that they change those who love them — but I didn’t want to sound trite, or minimize your loss. Today, though, I’m not afraid to say it. Brooke Michelle and Quinten Gabriel will have a legacy that will ripple through generations to come. Those precious, brief lives have changed us with their searing intensity. I have always loved my sister, but today I love her with a fierceness and tenderness that aches sweetly in my marrow. I feel joined to my brother-in-law as never before. The borders of my heart have been stretched a little wider, to take in more of the beauty and tragedy that surrounds us all. None of us will ever be the same.

Let Quinten Gabriel’s life deepen your capacity for joy and for pain. Let it open you and connect you and make you willing to risk. And thank you, Melissa, for the uncanny way that you and Quinten Gabriel helped prepare me and my family for our little treasure.

N.B. A special fund has been set up in Brooke Michelle’s memory. Contributions can be made to the Brooke Michelle Fund for the Prevention of Birth Defects. This charity will be administered by the University of California San Francisco and will help fund medical research. Checks should be made out to: UC Regents–Brooke Michelle Fund. Mail should be addressed to the Brooke Michelle Fund, c/o Dr. Karin Vargervik, University of California San Francisco, 521 Parnassus Avenue, San Francisco, CA 94143-0442.

Photo credit: luchschen

Dr. Greene is a practicing physician, author, national and international TEDx speaker, and global health advocate. He is a graduate of Princeton University and University of California San Francisco.

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  1. Kristin Mckenzie

    Dr. Greene,
    I loved reading about your families love for Brooke Michelle. As I am hopelessly “googling” tonight, it was a story that made me stop and agree how precious life is.
    In 2013 my husband and I lost a baby girl with trisomy 13. After genetic testing and meeting with MFM, it was explained to us that it was “bad luck”.
    Today I had an ultra screen of my second pregnancy. I went into the appointment aware of the last time we were there, but thinking this was routine. The nuchal fold was 9mm and I knew in a second that everything was not ok.
    We have the weekend to think too much, google and even pray for a miracle, but I am afraid that blood results early next week will show otherwise.
    I trust my FM…but I went from “bad luck” to him saying “it is like being struck by lightening twice”. I didn’t think this was a possible outcome and I am heartbroken. I don’t know what our next steps should be and wish this hadn’t happened to us twice.

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    • Kristin,

      We are so sorry for your pain … multiplied. Are hearts are with you.

      Best, @MsGreene
      Note: I am the co-founder of DrGreene.com, but I am not Dr. Greene and I am not a doctor. Please keep that in mind when reading my comments and replies.

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  2. Alex

    Thank you for sharing your story Dr, I also had a baby with trisomy 13. His name was Liam Alexander he was born October 3, 2016 and past way December 22, 2016. My fist baby and only baby. It was hard and still is loosing him, but I hope one day I’ll have another baby. It won’t replace Liam, but I hope it help with the pain. I am scared and sometimes I feel guilty. I know doctors told my husband and myself that it wasn’t our fault but that feeling of guilt is there. We will get tested before we have any more babies.. but just wanted to thank you for sharing your story. I haven’t shared Liam full story yet, but will try one day to share it.

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    • Alex,

      We are so sorry for your loss. It is a deep, deep pain.

      Best, @MsGreene

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    • Lorena

      Hi Alex, I also had a trisomy 13 baby. James was also born October 3. He was born in 2014.

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  3. Mary C.

    Dr. Greene, as a pediatrician you are among the very few Medical professionals that I have heard of that have had this experience and allowed it to change you. My daughter Moriah was born May 2015, it’s almost time to celebrate her 1 year birthday… The lack of support and care and any possible options for her were and are still unbelievable. We took her home, she was with us for 7 days. In our society we protect ourselves from pain. I love what you said about these precious children bringing us the option to choose to allow ourselves to experience a much deeper pain, because we allow ourselves to love them so deeply at the same time. It would be great for you to write more about the life of your niece on behalf of the children and families like her. Thank you for sharing. Thank you for loving her so well.

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  4. joel Osteen

    Joel Osteen travels, ministers and teaches. God’s signs and wonders follow John & Julie wherever they minister. Every meeting, God shows up and blind eyes and deaf ears are opened, diseases & tumors disappear, creative miracles of missing organs and bones being restored take place, cripples walk, mental illness leaves, emotions are healed and souls are saved.the Ministry’s healing anointing is so strong that many are healed while they sit in the meeting. An atmosphere of great peace, joy and freedom pervades the meetings and a fresh revelation of God’s overwhelming love for us touches many.

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  5. Shereen Kazmi

    I had a baby girl nine months ago who was diagnosed with partial trisomy 13. At first we didn’t know what was going on soon after her birth, however; we did know something was wrong because she had an extra digit on every limb. The shape of her head was also a little different which we found out a week later that she had mytopic craniosynostosis. Her first night after her birth was harsh too because she was having feeding issues because of her laryngomalaysia. It was like every week something kept on adding to her list of defects. It’s been 9 months now but I feel like a part of me has died from inside. Off and on I feel guilty thinking that it was something I could have prevented. I can’t sleep anymore at night because the future is scaring me to death. I need some emotional support and was hoping someone out there could point me in the right direction. I’d really appreciate it.

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    • Sandy

      Hi Shereen,

      Congratulations on the miracle of life you are holding. My husband and I also had a baby boy about 9 months ago with Trisomy 13, but unfortunately he passed away 7 hours later and is in heaven and I will see him again some day. Trisomy.org is a great resource. There is nothing you could have done to prevent this from happening. I went through all those feelings as well. Knowing the peace of God got me through everything. I also know of another lady at my church who has a Full Trisomy 13 kiddo and he’s 18 years old! Miracles do happen. I pray you have a great community of supporters around, that was very crucial in the healing process. In the meantime, just love on her unconditionally and cherish every moment because time is precious.

      Hugs,
      Sandy

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  6. Kayla

    I just want to say THANK YOU! No one knows the feeling of having a child born with Trisomy 13 and Dr. you are right even though they are physically gone they do make a major impact on the lives that they come in contact with. My husband and I didn’t know about our son’s condition until I was 5 1/2 months pregnant and trust me when I say I was heartbroken; despite the fact that I did have military doctors; in a sweet but not so reassuring way suggest a abortion. I could not take a life that I created no matter what the outcome would be. We was told the worst case scenarios possible that could go wrong for my son Israel, yet my son was able to contradict a lot of what was said by his pediatricians. He lived for 72 Days, and everyday was a blessing and a new outlook on life and what miracles can happen. I just want to say that I truly appreciate you for sharing your story.

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  7. Brian

    beautiful story. thank you for sharing it.

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