A New Lesson- part 2 (Doctors don’t always know best)

I was fairly certain Planned Parenthood was not discussing the possible risk of Breast Cancer with their clients, but I wondered about other Doctors. What about patients who did not view their pregnancy as a mistake, who didn’t want out?  But perhaps their baby was at risk? What if there were medical issues that were detected during pregnancy that would impact this baby and the family for the rest of their lives?  Were these moms made aware of the possible Breast Cancer risk, when presented with the option to terminate their pregnancy? It just so happens, that I have a friend in my life who is currently walking through the reality of this very topic. “Laurie goes to my church and is happily married with a 7 year old son”, was about all I really knew about her up until a few months ago. Recently, a mutual friend re-connected us, thinking that I could encourage her through a troubling situation. As you will read; she’s the one that encouraged me. Although Laurie and her husband have wanted a 2nd child for years, they grew to accept that the window of opportunity had now passed. But as we all know, God loves to surprise us. And God continues to surprise Laurie and her family with this little life within her. Given a grim diagnosis from the start, Laurie has inspired many with her choice to believe that God is in control. Here are her words… My journey with the medical community has truly been one of the hardest parts of my pregnancy.  It started at the point I found out I was pregnant.  I remember calling my OBGYN and telling the nurse I had a positive pregnancy test, I was nervous about my age, and basically was just reeling from the prospect of a baby at 48.  I remember asking what she recommends, and if I should go ahead and start prenatal vitamins until I was able to be seen by the doctor.  She said no.  Hmmmm…..that didn’t sound right.  I didn’t even think to ask why not, but as I processed through things later, I felt that was the wrong answer.  Maybe she thought I’d likely miscarry (I did spot off and on the first 10 weeks) and I was expecting it, too.  But as long as my baby was still alive, I should treat this as a normal healthy pregnancy, so I got some vitamins and started them immediately. At 8 weeks, I had not miscarried, so I made an appt with my OBGYN to see if the baby was still alive.  Indeed she was.  We saw her heart beating and she measured exactly as she should for my conception date.  I walked out of my doctor’s office with my new mom bag of goodies, an ultrasound picture of my little peanut, my Dr.’s sincere congratulations, and a referral to see a perinatalogist. In the 4 week time period dividing the two appointments, I remember praying A LOT!.  It was almost as if in the core of my being I expected something to be wrong, and I started to boldly ask God to knit my baby together healthy, and strong,and without any challenges.  Over those weeks of praying, I began to feel like it was all going to be okay because I knew God had planned this from the beginning.  I think because I knew he was orchestrating it, I allowed myself to believe she was also going to be okay.  I had a couple friends ask if anyone was going with me to the doctor and I said no, and invited them to come along.  But on that morning as I drove to the Dr’s office, I was sick to my stomach with fear, shaking uncontrollably.  I truly could not remember ever being so scared in my life.  I was so surprised by this reaction as well.  In hindsight, I think I was fully aware that if everything didn’t go well, I was about to enter a forever life-changing moment that there would be nothing I could do about.  I already knew that much.  Whatever it is, it is. At the beginning, the sonographer looked at everything and didn’t say much, but the mood was light.  My friends and I made jokes about how I was “peri & pregnant,” how that would make a great book title.  And no matter what, when you see your baby’s picture, you see incredible beauty and nothing else.  My heart was calm and I was certain it was all going to be okay. Then, after a while, the doctor came in to review the findings.  He was very gentle in his manner and set-up.  He took control of the camera to explain what they are looking for, and then showed me my baby and how the fluid on the neck area was much greater than normal, which is indicative of Downs.  He gave me the markers.  Usually, a 3.0 is normal, a 3.5 is now in the Downs range, and mine was a 5.0.  I remember lying there calmly as he spoke, feeling incredibly vulnerable with my back to the table, and a single, continuous tear beginning to flow from my right eye.  God, I prayed, help me bear this news.  In front of my friends.  Without my husband.  My ears began to ring so while I heard what the doctor was saying, it sounded so very far away.  And he had not stopped talking.  He was now talking about the heart chamber, and how one of the chambers did not seem to be properly formed and the blood flow was not normal.  Then he talked about a vessel he saw, describing it as extremely rare, something he’d only seen twice before, very life threatening.  Then he said something about the possibility of a cleft pallet.  In my head, as the list ticked on, I moved farther and farther away from the voice.  “Make him stop”, I silently screamed. By the time he stopped talking, I felt far removed mentally from the table I was lying on.  It was too much to process at once.  So I honestly can’t remember his exact words about terminating my pregnancy.  I remember him saying things like, “In cases like this…” and “best to do it early…..the longer you wait….” and “the baby may not survive….”.  I just shook my head and whispered, “No, I can’t do it.  I will never be able to do it.”  No, he did not indicate anything about risks.  He did mention that in the other two cases where the parents had a vessel issue like my baby, they both chose to abort so he didn’t have any info on viability / treatability.  He had clearly decided the worst about it, though. We then discussed next steps.  I should have blood work done to check for clinical abnormalities, and should consider one of the two chromosomal tests — the CVS or amnio.  I felt a little conflicted because given the “evidence” of a potential problem, I really wanted to know now versus later.  However, there were risks with either test.  The doctor seemed to assume a positive confirmation of Downs might make me change my mind.  For me, I knew that wasn’t the case, but I was worried about my husband and what he needed in this process.  Bottom line….I felt like God was telling me it was okay to get the test in spite of the risks so I could have more to share with my husband, who was often traveling with work and dealing with all of this from thousands of miles away.  In hindsight, I’m glad I found out now and not later because it took some time to grieve and accept the reality of our situation (the loss of dreams or expectations of what it is supposed to be like to have a daughter, mourning for my son who is going to have to share me, concern for my marriage and what I was requiring my husband to do because of what I will not do). The blood work did come back abnormal and the CVS was scheduled to take place at 14 weeks.  My husband came home to hold my hand through it (it was horrible).  And 7 days later, the results came in, confirming Trisomy 21.  I remember being relieved it wasn’t Trisomy 18 or something that carried a death sentence.  When the doctor told me it was a baby girl, I wept for that.  A girl.  Never in a million years would I have thought I’d have a daughter.  Once again, on the phone, as I sat in the middle of Wal Mart, the doctor asked me again if I was sure I was certain about not terminating the pregnancy.  I was in a stronger place now and had no trouble saying that I am pro-life, had held this position my entire life, had a strong faith in God’s plan, and it was not my life to take away.  It was rather for me to protect.  He never mentioned it again. Just days after that diagnosis of Trisomy 21, I decided I should call my other two doctors – my general practitioner and my neurologist – and let them know what was happening.  I was not prepared for their reactions.  My GP practically begged me to terminate the pregnancy, talking about one of his patients, “a beautiful woman” who gave birth to a “mongoloid,” as if this was one of the greatest tragedies ever.  He kept urging me to protect my family, my son, to spare myself the heartache and burden.  I just sat there and let him talk and didn’t say a word.  He didn’t have ears to hear. My neurologist wanted to challenge me in my decision not so much from the physical aspects of my pregnancy at 48, but from the mental.  She felt I had no idea what I was taking on, and was concerned my friends and family were encouraging me in a way that idealized the situation.  She wanted to focus on the harsh realities of a Downs child — they never develop beyond a certain capacity no matter what effort you put in, will suck away all of my time from my son and he’ll get less of me than he deserves (why am I willing to compromise that?), how it can be hard on a marriage, etc.  I explained to her I was not going into this blindly, and knew there was a spectrum as far as what my child will be capable of, but I was also not getting ahead of myself and assuming the worst like so many people do, and was trusting that God was in control and would not give me more than I could handle.  I then turned the table on her and asked why the medical community was so quick to expel that which is not “as it should be.”  I appreciated that she acknowledged that they have become cynical and hardened.  They have seen it all and have encountered the struggles and heartaches, which in turn has made it easier for them to rush to a solution that can remove that torment.  They are viewing the world and medical situations from a particular perspective, and because of the great number of cases they’ve evaluated and the likely outcomes based on their witnessed experience, they see this as a “help,” since they rely on prior evidence and study.  In other words, they do not value hope.  That conversation also turned into another opportunity for me to share my faith (I have never been very bold in this area and now it was becoming a regular conversation, it seemed).  What was interesting was my neurologist, who is Jewish, began to discuss her faith in God as well, and told me she has a great respect for my decision.  She never said so but implied she admired my choice, and did say, “Who knows….we Jews are still waiting for the Messiah.  You could be carrying him.”  Oh, my…. There was one little light in this journey.  My genetic counselor, who I met with in the testing stages and who would walk me through results.  After the Trisomy 21 was confirmed and she had talked through the diagnosis, she said, “May I ask you a personal question?  Why did you decide to not abort?”  I didn’t even hesitate to go straight to the heart of the matter.  God planned this baby, he gave her life, it is not mine to take away, it is a baby first and she is mine and I love her.  I could never end her life.  The counselor then “revealed” herself to be a believer as well, and the conversation went deep and personal because we “knew” each other.  I left the office that day thanking God for placing her on the path.  I needed to know there was someone out there talking to patients who believed in this choice, even if she was restricted in speaking of it. No one ever discussed the health risks of terminating the pregnancy.  Even when my subsequent testing showed all of the early issues had faded away, my perinatalogist did not acknowledge the mystery or miracle of the situation.  {Let me just interject something here: the rare heart vessel issue that persuaded the other 2 moms to terminate their pregnancies, has corrected itself. Perhaps this would have been the case for those babies too. Sadly, those mom’s will never know.} Instead, the Doctor didn’t speak of it at all, and when I asked, “what about….,” he would just reply, “It looks good.”    I even said, “So, basically, I have a healthy baby girl who has Downs.”  He was reticent to confirm this, but said, “For now, it seems that way.”  I realized in that moment how much doubt he is carrying around.  He is the bearer of bad news and has made a practice in delivering that news and soft spoken solutions in a very caring, but misguided way.  I am sure he has convinced himself it is the right thing to do. Below is a picture of Laurie’s baby girl at her last ultra-sound. As of today, baby Sophie only has 6weeks left before we all get to meet the little baby that has defied the odds and already has an amazing story.

Sophie Grace at 27 weeks. God clearly knows what he is doing.

Baby Sophie was born in August of 2012.

Welcome Sophie Grace.

Welcome Sophie Grace.

She is simply precious and loved greatly by her family.

18 months old!

18 months old!

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15 Responses to A New Lesson- part 2 (Doctors don’t always know best)

  1. Thanks for sharing this amazing testimony of faith.

  2. Barbara Trautwein says:

    Oh my goodness. We have a dear dear friend, a missionary we support in North Carolina who has a beautiful daughter with Downs Syndrome. The have fought for two years and now this beautiful daughter of theirs Bekah has just completed her first year of college. Just saying! Blessings to you!

  3. Christi Robinson says:

    Laurie’s story is so inspiring. Those of us who know her understand that the path she chose was deliberate and unwavering. So many of Laurie’s thoughts bring back memories of when our daughter, Terri Lynn, was fighting for her life in the NICU of Children’s Hospital in Los Angeles back in 1987. Terri was born at Tarzana Medical Center with a severe bilateral cleft lip and palate. As if that wasn’t enough, she also had a very small left ventricle (too small to sustain her life and growth) and an interrupted aortic arch. When Terri was ten days old, she underwent surgery to insert a G-tube in her stomach for feeding. She almost died in surgery because, although they administered 100% oxygen, she was barely staying oxygenated. After the surgery, her pediatrician (who had cared for our first three children) proceeded to tell me that Terri probably should never had been born, that she should have spontaneously aborted, but something went wrong, and she continued to grow. In my womb. A mistake. HIS opinion. He was trying to make me feel better. How ironic. His words became very far away, just as Laurie described, as my inward soul screamed “No!” She was not a mistake. Who are we to say that only perfect children are God’s creation? That somehow he forgot what He was supposed to do with the less than perfect child? How rediculous. How presumptuous. How utterly vain we can be. Life is not about us. Mothers are chosen to carry, bear, and raise their children. And God makes no mistakes.
    Children that are born with such severe abnormalities are expected to have more, hidden problems, so the doctors look. Incessantly. Tirelessly. Continuously. And find they did. I remember a doctor entering a small room and informing me that they had discovered that Terri Lynn had a cola boma in her eyes. “What does that mean?” I thought. “Shut up!” my mind shouted (I didn’t say it aloud) — “If one more person tells me there is another thing wrong with my baby I’m going to scream!” — The journey was a roller coaster at best. After several more surgeries, including a tracheostomy, Terri’s little body succumbed to a deadly virus that attacks the nervous system. As CMV ravaged her little mind, we made the decision to remove her from life support and leave the rest in God’s hands. I bathed her for the first time ever that day, in the little ICU private room. I dressed her in a soft gown and sat down to rock her, with all of the tubes and gadgets removed, she was mine alone. Her breath slowed without a struggle, as God transferred her little life from my arms to His own. And she went to sleep.
    On the way to the hospital one day, I heard a song that has forever remained my theme song for Terri Lynn. It is called “Shepherd of My Heart” — I remember thinking how perfect it was because Terri had so many congenital heart abnormalities that I had begun to believe some of the talk that was going around. Maybe babies like her were mistakes of nature, nobody’s fault, just happenstance. And then God used that song to remind me of the truth.
    “Maker of this heart of mine, you know me very well
    You understand the deepest parts more than I know myself.
    And when I walk through valleys, and when I’ve lost my way,
    I’ll trust in you, Shepherd of my heart.”

    God is very near in times of trouble. And he never lets us out of His hands.

    • wynottme? says:

      Thank you Christy for sharing your story here. It made me realize that God could have taken your baby while you were still pregnant, as the nurse suggested “should of” happened. But he didn’t. He wanted you to meet and fall in love with this little girl before taking her home. (Not many Moms get such a sweet preview of who they will be spending eternity with.) The sacrafices you made, the fight you fought, the countless hours you invested; none of it was a waste! I would imagine on the day that you “rocked Terri home”, the bond you had established with her was indescribable. A moment in time that made it all worth it and would change your heart forever. Some look at little lives like Terri Lynn’s and believe it was filled with nothing but pain, sorrow and heartbreak. But they do not feel what a mother feels. Why would God equip them to understand a struggle that He has not chosen for them? Through this process I have learned to not weigh myself down with what others think. God gives me just what I need, when I need it. Like your post. Another reminder that God uses Mom’s like you for a task that He knows few can do.
      God bless you,
      Kim

  4. Jina Virtue says:

    Laurie, I remember when we prayed for this baby, and Sophie is the long awaited answer to our prayers.. You are part of a story that we can’t begin to know the chapters of! Prayers are surrounding you and God is doing something beyond our comprehension! Love you! Jina

  5. Kathy Mann says:

    Dearest Laurie, I just found out about your Sophie last night, which led me to read your above story and Christi’s story too. How beautifully proud I am of your natural, tireless witness to the Drs and the loving reminder to us of God’s sovereignty and making no mistakes. I’m more than certain Sophie will bless us endlessly and I so look forward to meeting her. I also know this goes without saying, but “I’m just sayin”: I know you know your community, which I hope I’m included in, and we are so ready and waiting for any call, no matter how big or small, that we could assist you in your journey. I’m good at picking up groceries!!! ‘Good at cooking healthy meals!! Keep my number on ready dial… I’ll be there in a flash to do whatever would help.

    I love you dearly,
    Kathy

    • Kelly Cox says:

      I can verify this! Kathy saved me more times than I can count while on bedrest! I learned so much from everyone that helped us through those years! Kim, Kathy , Julie, Jennifer, so on and so on- Too many to name. What a blessing to have friends like those! Miss you all so much!!!

      -Kelly

  6. Charif says:

    Laurie- I have seen you at church all summer and thought how adorable you are pregnant and how happy I am for you to have a baby girl. I didn’t know any of this story until now. I am praying for you as you get ready to have this baby girl. What a blessing!!

  7. Carrol Werner says:

    Laurie, amen and amen!!! You know we all believe and we know God has a plan and it’s not for us to question. You have already been a blessing to so many and God will continue to use you and bless you and your family. We love you and pray that God give you strength for whatever lyes ahead. We are anxious to see your precious Sophie soon. Love you, Carrol and Jerry

  8. Doreen Stoutland says:

    Our God is an awesome God and makes no mistakes! We have a beautiful daughter now 23 years old with Downs…..Kasey Lynn Stoutland. She has only brought joy to everyones lives that she comes in contact with. I along with Laurie had to face the medical advices even after Kasey was born and they truly do not know how much harm they give in their advice. Can’t wait for Sophie Grace to enter this world. She will have an awesome family and she will bless you all!

  9. Teri Roy says:

    Laurie, you know some of my story…my perinatologist also asked Rick and I about aborting the “low egg”….which was Natalie!!!! We also said no and that we would let “nature” take its course. Well, obviously God had other plans!!! You are a true witness to all these naysayers in the medical field. God WILL bless you abundantly, no doubt there will be challenges ahead, but you have an amazing support system in all of us willing to help in anyway we can. Plus, others who have gone before you I’m sure will give you all their support as well. We’ll be praying for this miracle baby girl in the next few weeks as well as the rest of your family!

    Love, Teri

  10. Cathy Alfano says:

    Laurie, thank you for sharing your story. I look forward to seeing your precious daughter when she makes her grand entrance! God bless you!!

    Cathy Alfano

  11. Tammie Swift says:

    So blessed by all your stories… welcome to your sweet blessing, Laurie!

  12. Pingback: Sophie Grace | los angeles newborn photographer » Renee Hindman, San Diego Children's Photographer, Newborn, Baby, Child, Family

  13. MIchelle says:

    My sister had a Trisomy 13 baby – Grace Debbie Shedd born 15 October 2010. She was born straight into heaven. Despite the numerous attempts by Dr.’s to convince my sister that she needed to abort, she carried Grace the entire 9 months. When Grace was born, other than the two small holes in her back from the Spinal Bifida and the 6 toes she had on each foot, she was a perfectly beautiful little sweet girl. My sister wouldn’t do it any different. Grace was our special gift from God. She taught us so much and drew us closer to the Father through her life. Thank you for sharing Sophie Grace’s story. She is going to change the world with her story!

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