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the storm rages on…

March 12, 2012

Other loss moms understand the meaning of the Rainbow.

I’m still waiting.

Our storm still rages.

In fact the storm is fiercer now than it was during the month of October.

Not having any definite answers to why we lost a little girl after a completely healthy and uneventful pregnancy is both a blessing and a curse. Deciding not to have a biopsy or autopsy done was in some ways a defense mechanism.

I did not want to know there was NO REASON my daughter died. The implications of that are horrifying.

Yet in a nightmare I sit.

Since Miranda’s passing I have been exposed to more and more information that is frustrating and hurtful.

Six months ago I would have happily recommended homebirth as an alternative for a healthy mom with no complications of pregnancy and no complications in her baby. I would do that because I knew how beautiful birthing at home amidst only people you trust and invite to share the amazing moment of welcoming a new child into your life could be.

I was NEVER an advocate of “homebirth for every woman who desires it”. Just ask the friends that I clearly said “NO” to. There is always risk with birth. There is risk in everything.

The risk I faced was one that completely blindsided me.

When planning my homebirths I was mistakenly trusting that I lived close to a hospital. What I hadn’t considered was that it would take paramedics time to get to my home and time to transport to the hospital. I did not understand that there was no neonatologist at my local hospital. That means that if something was so grave that we needed to transport a newborn, my local hospital was NOT equipped to serve that baby. That is why as they brought Miranda into the ER they were immediately processing her for a transfer to a level 3 NICU in Baltimore. Unfortunately mere minutes have irreparable damage on a newborn.

I trusted that by choosing a Certified Nurse Midwife(CNM), the only legal attendants for homebirth in Maryland, I was choosing a birth attendant that was competent and trained to care for me and my newborn if an emergency happened. I trusted that she was well-practiced in neonatal resuscitation. I trusted that when Miranda turned blue that the actions she was taking followed that protocol. I trusted that her assistant also knew what she was doing. Even after Miranda was transported to the hospital I trusted that my midwife had the best interest in safety and care for my daughter and me. I believed that the relationship we developed over seven years of care and the birth of four of my children with her amounted to more than a patient/practitioner relationship. I understood that midwife literally mean “with woman”.

My midwife never visited me or Miranda while she was on life support. She did not come to the hospital with my pregnancy records to explain to the doctors what prenatal tests and screen I had or had not undergone. She did not accompany us to explain the labor and birth events to all the curious doctors and nurses that could not find something “wrong” with Miranda. She did not ever come. The first time I saw her after Miranda’s birth was a month and a week later… at Miranda’s memorial service.

Her nursing license was suspended one week after Miranda was born.

Since none of the information regarding her suspension was made public we were left to believe that it may be in relation to Miranda’s transfers since the dates so closely coincided.

In December an online news outlet published a story that included the summary of suspension from the October decision.

There were FIVE complaints against her. They DID NOT include Miranda. What they did include were the loss of another baby this past summer and a preventable brain injury of yet another baby. It was also clear that she did not have a written collaborative agreement with a back-up Obstetrician as required by Maryland. Any one of those things would have caused me concern and led me to consider an alternative. However none of this information was ever disclosed to me while I was a client of her practice. The complaints in the report date from 2008 through 2011. The combination of those complaints was devastatingly disappointing.

The homebirth community prides itself of serving women and providing choices and empowering them with education that helps them make those decisions.

Yet they hide the most important information because it hurts their “cause”.

That is not the definition of choice, in fact it is dehumanizing and demoralizing and bullying.

So what do I do now?

It came to my attention that a bill(HB1056) to license Certified Professional Midwives(CPM) in Maryland will be heard by the Health and Government Operations committee on Thursday March 15. I have been working to get in touch with some of the delegates on the committee to tell them my experience and explain why licensing more midwives with less training than the ones already licensed in Maryland is NOT the key to safe birth in Maryland. I am planning to travel to Annapolis that day to be sure that those hurt by homebirth are represented.

Being on the “inside” of the homebirth community for the past seven years I know my opinion and voice is not and will not be well received or supported.

I will not fail my daughter by sitting by silently.

If you would like to join me on Thursday please let me know. If you can not please pray. Pray for my strength and endurance as I stand for the first time in opposition of a women who just six months ago I would have given a glowing recommendation of. Pray that truth would be heard. Pray that change is made that seeks to protect the lives of women and children. Pray that the lifetime of a healthy child would be valued more than the experience of that child’s birth.

I know that some of you reading this may be a little confused. What about ACD(Alveolar Capillary Dysplasia)? Didn’t the doctors think that was what caused Miranda’s death? ACD was mentioned by them as a possibility because it was the only diagnosis they could find that would not respond to the treatments they tried. Since it is such a rare disease it is currently only confirmed by lung biopsy. Of the few known confirmed cases of ACD there are sometimes other anomalies present in the baby. Miranda did not have those anomalies. I have five prior healthy living children which suggests that we probably are not genetic carriers of the disease. I will still continue to raise funds and awareness for ACD because so much more needs to be known about the disease so that it can be more readily screened or diagnosed. We will never know if Miranda was an ACD baby.

It would be far easier for me to believe that she was. Easier to believe that where she was born did not matter. Easier to believe I could not have done anything differently to change the outcome. Easier to believe that my daughter could not have been saved.

I will not minimize her life in that way.

  ” And He got up and rebuked the wind and said to the sea, “Hush, be still.” And the wind died down and it became perfectly calm. ” -Mark 4:39

31 Comments leave one →
  1. Beth Tiedemann permalink
    March 12, 2012 11:54 AM

    You are brave. I am proud of you for standing up! I am praying for you!

  2. Heidi Riddle permalink
    March 12, 2012 11:58 AM

    My prayers will be with you….Many hugs!

  3. March 12, 2012 11:58 AM

    You are in my prayers.

  4. Shanna permalink
    March 12, 2012 2:02 PM

    ((hugs)) I would be there with you if I could

  5. Jen Sturdivant permalink
    March 12, 2012 3:29 PM

    You are always in my prayers. I wish I could go with you physically, to stand by you. I cannot physically be there, but I will lift you up extra high that day. My mom is a labor and delivery nurse, and a mother of nine. She has worked with midwives several times, and has even served as one at one time. She wanted me to pass on her prayers and support as well. Your faith speaks volumes. Much love!

  6. March 12, 2012 6:53 PM

    Unless we speak, there are those who may never know what we know. Hugs. Bravo to you for your courage.

  7. Danielle Thompson permalink
    March 12, 2012 9:36 PM

    Lisa, you are in my prayers. You have been in my prayers for many months. I admire your strength and courage.

  8. March 12, 2012 10:55 PM

    It is appalling that your midwife let you down like that. She should have been by your side at the hospital and it is shameful that she wasn’t. I hope that in this new mission of yours that your are able to bring about good things for midwiffery and the safety of moms and babies in your part of the world.
    May the peace of God that passes all understanding guard your heart and mind in Christ Jesus.

  9. Laurie permalink
    March 12, 2012 11:39 PM

    I have no words. My heart hurts. I am so sorry …. Wishing you didn’t have to do any of this at all, wishing I could be by your side, but I will be lifting you up in prayer, Thursday … As always. Everyone needs to hear what you need to say, and you need to say it. I love you so much.

  10. Jeremy Galvan permalink
    March 13, 2012 3:59 PM

    I cannot imagine the pain and heartbreak your family has experienced. As a Paramedic who has worked on 6 infants and children in Cardiac Arrest I have seen first hand the pain, however as a new father I have no experience in what it actually feels like. My family’s prayers are with you.

    My goal with HB1056 is not to make home birth less safe. There is almost no way to make it any less safe than how Maryland is operating right now. We have 5 CNM’s attending home births. And everyone else who chooses home birth ( around 150-200 a year) are left to use no one or an unlicensed midwife.

    I appreciate licensure as it holds my profession accountable to its actions. If I come to your house and I mess up I am held responsible. Maryland requires that I re-certify every 2 years. I am made to take 6 classes including a refresher course which is a week of training to make sure I can still do all the things you hope a Paramedic is going to be good at when they shows up at your door.

    These are all things I want to bring to the Midwifery profession in Maryland. I no longer want the variety of training and retraining. I want consistency. When you get a midwife in Frederick, and she can’t make it last minute and you need a different midwife… they should have the same training. What you said about disclosure is important. They should be required to be upfront with their career and let people know what the risks are. That said we need to use research with some credibility and not sources that are filled with opinion.

    HB1056 is going to accomplish this for Maryland.

    I am working with all the Home Birth midwifes in Maryland, including Nurse Midwives to make sure that we are going for a system that is safe, allows access to families to midwife care, and allows midwives to operate only within their scope of practice.

    I encourage you to come to Annapolis and tell your story. Please feel welcome there. I would ask that you come introduce yourself to me as I would like to meet you. Your experience is a tragedy that I pray my family will never have to endure. I made my wife read this post because I thought it was so well written and I want her to make sure next time she has a home birth she understands that this is a possibility.

    Thank you for your honesty and willingness to speak about this.

    Please feel free to contact me anytime with questions about Thursday, or about the Bill. It has changed dramatically and I would want you to know what it says if you are going to oppose it.

    Jeremy Galvan
    Maryland Families for Safe Birth
    1-408-MY-BIRTH / 1-408-692-4784

    • March 14, 2012 11:04 AM

      Jeremy, thank you for your reply.

      I appreciate what you are saying and continue to disagree, not because of opinion filled research but because of my first hand account of how even the current licensing policy is failing Maryland moms. Every time an offense is reported instead of demanding answers and reform from the offending midwives and supporting the families that mourn the most devastating loss I continue to see community members rally around those accused while the families who’ve buried their children receive the comfort(?!?!) that “sometimes these things just happen”.

      When will those who are already licensed respect and follow those laws and submit to authority? And exactly what standards will CPMs in Maryland follow? Even the standards listed on NARM’s website allow for deviation in modes of education. They also state that they affirm the autonomy of the independent midwife. That doesn’t seem to say much for willingness to be held to a system where accountability is required.

      HB1056 is going to accomplish this for Maryland.

      I am working with all the Home Birth midwifes in Maryland, including Nurse Midwives to make sure that we are going for a system that is safe, allows access to families to midwife care, and allows midwives to operate only within their scope of practice.

      I so wish that were the case, but again I will say that my own first hand experience says otherwise. I know full well that my own CNM practiced outside of her scope of practice as set by the ACNM. When will the home birth midwives admit that there is risk that could be mitigated within a hospital setting and counsel women to transfer to OB care and support them in the medical environment by collaborating with doctors instead of continuing to vilify the obstetrical community? A big part of parenting is sacrificing your own wishes when you need to make a decision that provides a better situation for your child. Seeking a blissful birth experience ought not come before the right of the child to survive birth with a healthy outcome.

      As for your example comparing it to what is required for paramedics, is this licensure or is it certification program? Will you admit that there is a difference? Again I will point out that my particular experience also included paramedics, they did exactly their job of continuing care that had already begun by the licensed professional in attendance for transport to the nearest medical facility. Unfortunately that care was not sufficient according to neonatal resuscitation protocol. She was hypoxic. She was not bagged. My midwife never bagged her and therefor neither did the paramedics, they followed her lead.

      Why the great push for the CPM licensing? Why is the nursing training of the CNM not acknowledged as important? Why do we want to set our standards lower then they currently stand? Wouldn’t more exposure to the birth emergencies that do occur in low-risk situations be helpful for furthering the safety of homebirth?

      • Jeremy Galvan permalink
        March 14, 2012 4:42 PM

        I completely agree that getting your message out in the public is important. I support 100% you coming to Annapolis and talking about your experience. I hope that perhaps at some point tomorrow we could have a conversation about this face to face.

        I am happy to meet up after the hearing and talk for as long as it takes to make sure that your concerns with both Nurse Midwives and CPM’s are written down by me and understood. I would bet we agree on far more than you’d expect.

        Feel free to contact me anytime.

        Jeremy Galvan

  11. Melanie permalink
    March 13, 2012 7:31 PM

    Lisa, I am so terribly sorry for the loss of Miranda. You have such great courage and integrity to look squarely at what happened and fight for Miranda’s memory and other people’s babies.

    You honor her.

  12. Beth Richardson permalink
    March 13, 2012 8:18 PM

    My heart is heavy for you and Vince. I love you and will be praying for you.

  13. March 13, 2012 8:36 PM

    You are indeed a brave mama. THANK YOU for sharing your story. I am a CNM in North Carolina with a homebirth practice and one of the FIRST things that I counsel potential clients on during their initial consultation with me is the inherent risks of having a homebirth ( the largest being a delayed response time in case of emergency). A mom/babe can live minutes from a hospital but if it’s a true emergency and a transport plan has not been created then the results can be devastating – even in the best of circumstances…again, I am very sorry. Best to you and yours and may you find peace in your heart ..warmly, Deb

    • March 14, 2012 11:08 AM

      Thank you Deb. I appreciate your honesty as I hope your clients do.

  14. Stacey Jw permalink
    March 13, 2012 9:55 PM

    I’m so sorry you had this experience, no one should have to live through this particular tragedy.

    You did everything right, but were blindsided by a negligent MW and the small, but inescapable risk of being out of the hospital. The saddest thing is- there was NO way for you to know these things about your MW.

    Thank you for standing up to tell others about this. I am sad to say that the HB community will not want to hear it, and may even attack you. Please stay strong, there are other loss moms out here that can help you.

    (Jeremy- this is not the time or place to promote your wrong headed beliefs. Please do it elsewhere. CPMs are not properly trained, and licensing them will not make them any better or more accountable, but will make moms believe they are safe when they are not. Please look at any state that keeps stats on HB MWs and see how very dangerous HB MWs are- CO, CA, MI, WI are just a few. CNMs are the very best as far as MWs go, and even they are sometimes very negligent. Licensing lesser MWs is no answer.)

  15. Julie Beard Waterbury permalink
    March 13, 2012 11:12 PM

    I am honored to be able to support you in this manner. I am so proud of you and continue to be awed by your strength. I will see you on Thursday in Annapolis!

  16. Cait permalink
    March 14, 2012 6:52 AM

    I’m so, so sorry for your loss. I will try to make it at least for a short time on Thursday.

  17. Evie White permalink
    March 15, 2012 6:32 AM

    thanks for sharing all of this, I had no idea how the ‘storm’ is still raging in your lives but wow yes so much to consider and also take action on as God leads you.
    I will be praying for you today (the 15th) as you go. I know God can and will speak through you, I will pray for those that need to hear, need to take action. Please let me know if there is anything else I can do for you or your family….but you can count on prayer!

  18. Emmaline H permalink
    March 15, 2012 7:17 AM

    Praying for you today. God please grant my friend strenghth as she testifys today. Give her the words that she will need, give her courage to stand in front of those who may disagree with her. We pray for the opening of the minds and hearts of all who hear your life story today. Amen

  19. Karen Distefano permalink
    March 15, 2012 9:55 AM

    Lisa and Vince

    My prayers and love are with all of you. You are so amazing and such a blessing to everyone’s life you touch. Miranda will always be in my heart and everyone elses. You did everything and then some and are a wonderful mom.

    I love you

  20. bethmorey permalink
    March 15, 2012 5:23 PM

    Oh my. I’m so glad that you got to speak up and speak out on this issue. You’ve honored Miranda, and hopefully your words and others’ will save future babies from preventable deaths.


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