Pearl Joy, Baby Girl with Alobar Holoprosencephaly, Turns 1 with Big Celebration


Little Pearl Joy Brown turned 1 on Saturday and celebrated with balloons, a taste of birthday cupcake on her pacifier, and the smiles of hundreds of friends and family at a Nashville park.

The party was another unexpected blessing for Pearl and her parents, Eric and Ruth Brown of East Nashville.

Pearl was diagnosed in the womb with rare disorder called alobar holoprosencephaly, or HPE, which is almost always fatal. Pearl was not expected to survive birth, and if she did, her life would likely be short.

Doctors suggested that the best choice would have been to end the pregnancy. But the Browns, people of deep faith, believe that God made Pearl just as she is.

Every Friday for the past year, they lit a candle and sang happy birthday to her, not knowing how long she would live.

When she hit a year old, the Brown decided to celebrate with a pot luck and cupcakes at Fannie May Dees Park

“We had a grand old party in the park,” said Eric Brown.

Earlier this year, the Browns learned that Pearl may actually have semi-lobar HPE, a less severe condition, which has a longer life expectancy.

Still life is hard. Pearl has a weak immune system and had had to fight over several bouts of pneumonia. But she still keeps fighting.

Read more here.

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Global Genes Comments

  1. Deborah Phillips says:

    I don’t know if this will help ease some of the question concerning whether or not to have a child with any disability, but for what it is worth, living my entire life with many severe health issues in which I should have died, died at one point and have lived with constant pain, seizures, strokes, aneurysms in the brain as well as being burned as a child, I leave each of you prospective parents my belief on life…
    We each have one moment on this earth…one moment to be born, live, love, nurture, grow old and die. We should do all the things we ever dreamed of with just two rules; one, do nothing that will permanently harm yourself and two, do nothing to harm your fellow human being. You only have one moment on this earth.
    That being said, ponder on these words as they will help guide you to your answer. Then use your strength and higher power to help you through your choice.
    Blessings to each of you and to to your decision.

  2. Why do people think that to terminate a pregnancy will mean that the child will have less pain? The baby is the same child inside or outside the womb ! Havnt u seen a chikd born at 22 weeks gestation ? They move, they cry, they are human. Far out this makes me so livid to think that people actually believe that if it goes to full gestation it will feel more pain based on being in the outside world. Nerve endings, pain signals, skin. A life is a life from the beginning to end. Doesnt matter where the life resides inside a body or outside a body. I wish people would think

  3. MEG GRAHAM says:

    My grandson will be turning 7 this year… we learned not to listen to the doctors but to just trust God to work in his body and so far he has surpassed all of the doctor’s initial prognosis!
    Lots of love is the best medicine.

  4. I am pregnant with twin boys. One was diagnosed with alobar holoprosencephaly at 16 weeks. We believed abortion was not an option and if this is how God wanted him to be then so be it. It’s very hard to deal with although we have been trying to stay as positive as possible. On all of the ultrasounds he is completely normal except for a double cleft lip. I just found this website and would absolutely love to talk to the women who are going through the same thing or have already gone through it. I have so many questions for you. I hope God watchest over every single one of you and wraps his arms around those precious babies.

  5. I have an 8 month old baby boy who has Alobar Holoprosencephaly also… He is a joy to everyone.

    I would love to be in touch with anyone who would like to chat about their child with same condition ?

    • Hi Julie,
      We had a daughter born with alobar holoprosencephaly in 12/31/1991. She died 86 days later.

      If you want to talk, you can text me at
      585-613-6956.
      I know it’s ​been a long time since she
      (Victoria Grace) was alive but the experience is still quite clear in my mind to this day

      • Andi Budianto says:

        Hi Andrew,
        My wife and I just have a baby boy last Christmas. The baby was diagnosed with HPE semilobar.
        Everything looks normal now (face, body, crying, nursing, etc.).

        The doctor did CT-scan upon delivery and confirmed the same finding, no divisive structure between left and right brains. The doctor also cannot suggest anything but to wait and see.
        If you don’t mind, I would like to know more about:
        – tips on handling HPE babies
        – what primary cause of death in HPE babies

        Thanks,

        Andi

  6. My daughter, my first child, Sabrina Amethyst, has just been diagnosed with semilobar holoprosencephaly at 5 months gestation. She has no other anomalies- her heart, spine, face, hands, and feet look perfect. Not even a cleft lip or hypotelorism. She’s beautiful. She looks like her parents, even on scans.

    I got an MRI, and the other doctors say they don’t think it’s HPE, but there are absent structures in her brain. The doctor who did my ultrasound still believes her original diagnosis. She also went so far as to say that the doctors who reviewed my MRI are “inexperienced.” They were supposed to be specialists. She can’t even tell me if she’ll be in pain or not. She told me two of the missing structures. There are people out there, missing the same things, who live normal lives. I need more information… I don’t know what to do.

    I feel her kicks, I tell her how much Mommy loves her, I sing to her. I cry until I fall asleep. I wake up crying. She may have a short life, full of pain. I don’t know if I can let her suffer. She wouldn’t be able to let me know. I also don’t know if she could be one of the miracle HPE children. I’m so conflicted. How can I bring her into this world to hurt? But how can I live knowing that she may have had a chance at life without surgery and tubes and seizures?

    I’m asking the Lord for strength, decisiveness, and mercy. He knows how much I love my daughter and need to do right by her. I love her. I love her.

  7. i have one baby that birth with Alobar Holoprosencephaly.now she is 3 years old.

  8. I have a miracle baby girl named Sidnee that will be turning 9 and was diagnosed with Alobar Holoprosencephaly during my pregnancy. Prayer does work!

    • Kristine Arnold says:

      Hey Sarah! Our grandson Vinny has Alobar holoprosenphaly but not deformities. He was born 6/6/18. Spent two weeks in nicu. Home now . He moves, drinks 5 oz of formula, has a nurse from Kosairs every week to check sodium levels which are great! Below 150. He moves, etc. need feedback please. My name is Kristine arnold . My email is carnold68@sbcglobal.net. Please give me some of your feedback please

  9. Laira khullar says:

    I m suffering de same I m five mnths wid twins one of my baby is suffering wid alobar holoprosencephaly…I m continue my pregancy help me

    • patty cruz says:

      Like the article says, the family have deep faith in GOD and believe God made her just as she is. Its hard at first to hear this news but as i say, babies with no diagnosis doesnt guaranteed a full healthy life. Just love ur babies the way God made them for a reason. Our kids are a borrowed gift from God! By Someone who has a 6 month baby boy diagnose with Alobar HPE at 4 mths pregnanc.

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