Birthing Plan, Trisomy 18

Prenatal diagnosis – Trisomy 18 – Palliative Care – Hospice – Prenatal screening – Genetic counseling

This birthing plan, for a child with trisomy 18, was prepared by Patricia Lawson, a trisomy parent.

Parents:  Elliott & Patti Lawson

Baby:  Regan Adeline

After our daughter Regan was diagnosed with Full Trisomy 18 at twenty weeks our lives completely changed forever.  The emotions you experience are unexplainable – even to your partner who is going through the same thing.  I had been pretty lucky throughout my whole life to manage every challenge I was given.  Well, that hot day in July proved to be the end of the control that I thought I had over my life.  Here we were receiving the most precious gift two people could ever hope for, and she was going to be taken back.  This was inconceivable for a control freak like me.  I once told my husband that getting a diagnosis of Trisomy 18 was similar to being told your child has an incurable Stage IV cancer.  You don’t know how long you will have this child, and you have to choose how you are going to embrace the time that you do have.  There is no right or wrong decision when it comes to deciding what is best for your child because it was all done out of love.  Every choice you make following this diagnosis is what is right for your family and your child.

After spending weeks of sleepless night on the Internet researching everything on Trisomy 18 I could find – I made a choice.  I am going to organize every possible thing that I have control over.  I fantasized what it would be like to plan her birthday parties, take her to pick out her first prom dress, and help her plan her dream wedding.  All these details I had envisioned were never going to happen.  This was my way of having these special moments with Regan – just in a much different way.  Someone titled all this preparation as my “anticipatory grief” – it really ticked me off at the time, but I have learned to love the title.  So I made a list of things I wanted to accomplish prior to Regan’s birth with the mindset that she was in the driver’s seat.  She had the ultimate control on whether or not this list got completed.  Everything on this list that was needed worked out wonderfully, and I strongly encourage anyone carrying to term to consider doing the same.  It helped relieve a lot of pressure at such a stressful time.

I am happy to share my list & what I did to complete it.

  1. Read books on people who have carried to term with a poor diagnosis

  2. Inform family & friends to make my pregnancy easier

  3. Devise a way to explain to my 4-year-old son his sister’s diagnosis, and incorporate him into the pregnancy as much as possible.

  4. Have maternity photos taken

  5. Go to counseling

  6. Join an online Trisomy 18 support group

  7. Arrange a photographer for after her birth, and get items to be used in the photographs

  8. Make palliative care/hospice arrangements

  9. Pre-plan funeral arrangements/write an obituary

  10. Create a birth plan

These are some of the resources that I used during my pregnancy that I found helpful.  I did not get everything I needed out of one book or one Internet site.  I learned something different from each individual place.

BOOKS

I Will Carry You by Angie Smith

**She also wrote a beautiful song titled I Will Carry You (Audrey’s Song) performed by her husband’s musical group Selah.

I played it for Regan every night, and had it sung at her funeral

Waiting With Gabriel by Amy Kuebelbeck

For The Love Of Angela by Nancy Mayer-Whittington

Empty Cradle Broken Heart by Deborah Davis

An Exact Replica of the Figment of My Imagination by Elizabeth McCracken

Empty Cradle by Deborah Davis

A Gift of Time by Deborah Davis & Amy Kuebelbeck

***This book is new and available January 2011

CHILDREN’S BOOKS

After explaining to my son about Regan’s diagnosis, I would occasionally read these books to him before bedtime.  I would just modify things in the book to make them fit into our situation.  He would often ask to read our “Regan books,” and run to pick out his favorite one.  This was a great way to create an opportunity for him to open up and ask questions.  Being so young, I had a difficult time knowing if he was putting all of the pieces together.  Then one night I heard him tell my mother, “Grandma, Regan has a really bad heart.  I love her lots, but she is going to go to Heaven.  I won’t be able to see her, but she is going to see me and be my angel.”  That is when I knew that we were going about this the right way.

Pre-school/Elementary

We Were Gonna Have A Baby But We Had An Angel Instead by Pat Schwiebert

Something Happened by Cathy Blanford

Thumpy’s Story – A Story of Love and Grief Shared by Thumpy

by the Share Pregnancy & Infant Loss Support Organization

Older Children

What’s Heaven by Maria Shriver

INTERNET

www.trisomy.org

This website gave me insight to the fact that some Trisomy babies do survive.  It provides great images of Trisomy survivors & their families.  I kept this site for further reference if Regan was to be a miracle Trisomy child to give me support for her future medical treatment.

www.trisomy18.org

They have individual private boards for parents choosing to terminate or carry to term.  I joined the carrying to term board to receive support from current & previous Trisomy parents.  They also provide photos & stories of individual families.  My husband & I used this particular section to prepare us visually for the malformations that Regan may have had.  **In the end you don’t even notice any imperfections – their beauty only amazes you.

www.nowIlaymedowntosleep.org

This site has multiple resources for families including finding a participating photographer.  Please note that they only photograph babies after 25 weeks gestation.  I had maternity photos taken with a private photographer.  She was more than willing to photograph Regan if she was born prior to 25 weeks.  Don’t be afraid to contact photographers & ask them to do the same.  If photos are unable to be taken in the hospital some are willing to travel to the funeral home.

www.youtube.com

Believe it or not if you type in “Trisomy 18” or “Trisomy 13” people post the most amazing tributes to their living or deceased Trisomy children.

www.nationalshare.org

Provides a great resource to find support on any type of infant or pregnancy loss.  The site also contains literature on loss, online support, as well as training professionals in dealing with loss.

www.rowantreefoundation.org

They have wonderful articles written by parents who have lost a child.  These are wonderful – they let you know that your “crazy” feelings are totally normal and provide tips on how to cope.

www.perinatalhospice.org

They have every possible resource available from hospice programs to finding an infant casket.

www.livingwithtrisomy13.org

www.benotafraid.net

INFORMING FAMILY & FRIENDS

Nothing after receiving a diagnosis is easy.  I was determined to find a way to make it as painless as possible.  I still had 20 weeks to go, and knew that mentally I could not take a million questions on whether or not I had Regan’s room ready.  We personally told the news to immediate family & friends.  I chose to send out a mass e-mail to everyone else.  I wanted to let everyone know that Regan was still a huge part of our lives, and I didn’t want them to ignore that she existed.  Although I still had to survive conversations with strangers and people I didn’t see often, it did help minimize the awkwardness of telling people face-to-face.  This is what I wrote:

Dear Family & Friends:

As most of you know Elliott & I are expecting our second child in November.  At our 20 week ultrasound and after several other tests our “Petite Little Princess” was diagnosed with a severe chromosomal abnormality.  I will continue to carry our sweet little Regan Adeline until she and God decide it is her time to go to Heaven.  Although we don’t know how much time we have with her – we continue to cherish every minute we have.  We will be preparing Braydn for what is ahead, but continue to teach him that Regan is still a very large part of our lives.  He is continuing his big brother duties of touching and talking to her.  Our wish is that everyone around us continues to do the same.  Our time may be limited, but we want her to continue to receive as much love as possible.

We really appreciate all the love, support, and prayers!

With Love,

Elliott, Patti, & Braydn

TELLING A YOUNG SIBLING & PRESCHOOL/DAYCARE PERSONNEL

After crossing that so called safe 12 week mark, we told our son he was going to become a big brother.  To my surprise, he showed absolutely no interest.  I think he realized after being king of the household for 4 years, he was about to be dethroned.  I devised a plan that I thought would be easy for him to understand, and provide great memories of Regan at the same time.  Given his disinterest in his little sister, I was shocked by his reaction once we told him.  We sat down one morning at breakfast, and explained to him that Regan had a really bad heart.  We gave small details that her heart didn’t go “kaboom” like ours did, and that the doctors were unable to fix it.  We reassured him that his heart, and our hearts were fine.  We put in plain words that Regan would go to Heaven sooner than we would, but we just didn’t know when.  He repeatedly began saying over and over, “Poor Regan.”   I had been pretty brave throughout this whole ordeal, but this just crushed me into tiny little pieces.  To break away from the never-ending questions about

Heaven, we told him we were going to have a special family day.  We took him to Build A Bear so that he could make Regan a very special bear to someday take to Heaven with her.  I had no idea that this bear, he named Darby, would make such an impact on all of us.  Darby was to go on all fun family functions, and record all of our great times together.  When it was their time to go to Heaven, she was to remind Regan of all our recorded adventures.    Darby was created with 3 hearts wrapped in band-aids that I brought from home.  She has a voice-recorded message stuffed in her paw from all of us broadcasting how much we love Regan.  After a fluff bath, new outfit, and design of her birth certificate – Darby then became our 3rd child.

When the time came for Darby to go to Heaven with Regan – he was unable to part with her.  Darby then quietly whispered into Regan’s ear prior to her departure all of those enjoyable moments she had collected.  I can honestly say that I am glad that Darby stayed.  Darby made an appearance in our Christmas card, and will for years to come.  She is a great memory of Regan for all to see.

Braydn was to start pre-school in the weeks following Regan’s diagnosis.  I was worried about him in school because he would often say to pregnant women, “Is your baby going to Heaven like ours is?”  This could prove to make a very awkward situation with a stranger.  I decided to inform his teachers at school so that they were prepared for any comments or questions he might have for them.  I wanted to keep our explanation very consistent to avoid any confusion for him.  This is what I wrote:

Dear Donna –My son Braydn will be attending your 3-4 year old, afternoon, 3-day a week program.  I apologize for doing this by e-mail, but I think orientation may be a little too hectic for this discussion.  I wanted to inform you of a situation going on in our household.  I would like to keep all the facts straight in order to avoid confusion for Braydn.  So if you could please inform all the other teachers whom he may have, I would greatly appreciate it.I am currently six months pregnant with our daughter Regan. About a month ago, she was diagnosed with a severe chromosomal defect.  Her prognosis is not at all positive.  Despite this, we have decided to continue on with the pregnancy.  Unfortunately, we do not at all know the timeframe.  Some babies carry to term, some are stillborn, and some live a few minutes to a few hours.  We have already began to prepare Braydn for what is to come so I wanted to provide you with some of the details we have given him, so that we can be consistent.  He is very curious with us & will mention to others small bits & pieces, but doesn’t seem to get as involved with others as he does with us.  We have told him that Regan has a very bad, sick heart.  We explained that the doctors are unable to “fix it,” she probably won’t come home from the hospital to live with us, and that she will be going to Heaven to be with Jesus.  He asked if her heart was breaking or bleeding, and we told him “No” that it just doesn’t go “kaboom” like ours does.  We explained that he doesn’t have a bad heart, and that Mommy/Daddy don’t either.We still very much acknowledge her while I continue to be pregnant.  We talk to her, sing to her, & play music for her.  He is very curious about heaven & is concerned that Regan will hurt her eyes as she flies through the clouds to Heaven.  We reassured him that Regan is not in any pain now & will never feel pain in Heaven or on her way there.  He has built her a very special bear named “Darby” that he loves & takes care of.  We take her to all kinds of special places with us.  Darby will go to Heaven with Regan, so that she can remind Regan of all the fun stuff we did while they were both here with us.  This was the easiest thing we could think of for his level of understanding.  It seems to be working well, so I am not sure if he will want to bring “Darby” to school or not.  I will not encourage it or offer it, but if he wants to I hope that you can somehow work with this.If you have any questions please feel free to contact me at anytime. I appreciate your cooperation & understanding.

Patti Lawson

MATERNITY PHOTOS

Not knowing how long Regan would be with us, I quickly scheduled an appointment with a private photographer.  I had Googled “maternity photos,” and got an idea of what I wanted prior to our session.  My sister had knitted Regan a beautiful blanket and booties.  I brought these to the session along with Darby.  I made a lovely collage board of these photos for Regan’s funeral.

SUPPORT DURING THE PREGNANCY

Besides Internet online chats I had a difficult time finding support.  The genetic counselor from the hospital had called one day, and asked if I would like to be in contact with a Trisomy 18 mother whom had carried to term two years prior.  We talked through e-mails, phone calls, and met several times during the pregnancy.  This is by far the best support that I received.  She is a remarkable person, and demonstrated to me that I did have the strength to get through this.  Unfortunately, we had to meet through the bond of two lost children.

I encourage you to ask your physician or genetic counselor if they have ever had a patient with a similar diagnosis to your child.  If so, have them ask that patient if they would be willing to talk with you.

About one month prior to Regan’s birth, I did muster up the courage to attend an Early Loss Support Group through the hospital.  I was a bit hesitant knowing that these women most likely loathed the sight of a pregnant woman.  Everyone was very understanding – I found that it is a great place to express all those feelings you may not feel comfortable sharing with close family and friends.

Support groups can be found through the SHARE Foundation at www.nationalshare.org

Several hospitals and churches also hold monthly grief support groups.  They might also be found through your physician or the hospital’s Perinatal Loss Coordinator.

There is a facility located in Northern Wisconsin that provides special retreats for couples or families who are facing the serious illness or loss of a child.  More information can be found at www.faithslodge.org

PHOTOGRAPHY

After passing the 25-week mark I started to organize photography with the Now I Lay Me Down to Sleep foundation. This organization provides a free service to families who have lost their baby or for babies that are very ill.  I found the program coordinator information for my area on their site at www.nowIlaymedowntosleep.org

I explained my situation, and would from time to time send an e-mail as my due date got closer to keep her informed.  The hospital contacted her after Regan was born, and she made a special effort to be our photographer that day.  I am very grateful to her for the beautiful memories she created for us.   The foundation requires a consent form to be filled out, it can be found at this link www.nowilaymedowntosleep.org/medical/

I filled it out prior to her birth, and packed it in my overnight bag.

Along with a special outfit, blanket, booties (and Darby) I found some other things for Regan to be photographed with.  Our family nickname is the Leapin’ Lawson’s so I found a really cute crocheted frog hat, matching mother and daughter bracelets, and made sure both our wedding rings were with us to wrap on her toes.

Most hospitals have a media department or a camera handy on the Labor & Delivery floor if you are unable to have a professional photographer.  I cannot stress how precious these pictures are to me.  It may seem uncomfortable at the time the pictures are being taken, but you will be very thankful that you have them as time passes.


PALLIATIVE CARE/HOSPICE ARRANGEMENTS

In the event that Regan survived, we wanted to bring her home as soon as possible.  I decided to pre-arrange possible care at home, so that her discharge would not be held up while these arrangements were being made.  This proved to be somewhat of a challenge since palliative care programs for infants are scarce in most parts of the United States.  There is a website www.perinatalhospice.org/Perinatal_hospices.html that has a listing of programs throughout the United States.  Unfortunately, there was not a program in my immediate area, but the closest one was a great help.  They helped me find a hospice facility in my area that had previous dealt with infants.  The physician for their program offered his services to the hospice facility I chose, if they were to have any problems.  I also contacted my son’s Pediatrician who was willing to join in on the care Regan may have needed.  With a combined effort, I felt comfortable with the resources that I had available.  The hospice facility can also provide support prior to the birth.  Surrendering to hospice does not mean that your baby is going to die.  Many Trisomy babies “graduate” from hospice; it is just another form of support on many different levels.

PRE-PLANNING FUNERAL ARRANGEMENTS

This can be a very sensitive subject for parents carrying to term.  I observed several different reactions from people when they found out I had pre-planned funeral arrangements.  I simply made everyone aware that I didn’t have to pay any money for doing this, and if we didn’t have to use these arrangements we were going to be the happiest couple on the planet.  Looking back, I am glad that we did.  The days after she passed made showering by 7 P.M. very challenging.  I couldn’t imagine having to pick out prayers, a casket, and a cemetery at that time.  On the way home from the hospital, all we needed to do was stop at the funeral home, and sign the already prepared paperwork.

If money is tight in your situation, a fact I have learned is that interment providers do not take you to the cleaners when it comes to infants.  All the charges we had to pay for were the exact cost that the funeral home incurred – there is no mark up.  Cemeteries will provide a free plot in the infant section, but you are responsible for the opening/closing cost.

CREATING A BIRTHPLAN

Everyone’s decision on how they handle the birth of their Trisomy child is all very different.  That is completely fine.  I don’t think anyone in our predicament would point a finger at another parent because of the decisions that were right for him or her.  Like I previously stated, everything we choose to do is done out of love for our children.  That is the bond we all share.  Along with all the other complications surrounding Trisomy, every child is completely different.  There is no way to predict what will happen with your child, so you have to plan for several different scenarios.

Throughout my pregnancy, I met with important medical personnel to help me pre-plan Regan’s birth.  Key individuals to meet with are perinatal loss coordinators, NICU physicians/pediatricians, social workers, and charge nurses on the Labor and Delivery floor.  I was very fortunate to have a wonderful perinatal loss coordinator.  Unfortunately, all facilities do not have such a designated individual.  In this event, a charge nurse could perform most of the tasks you need help with.  She strongly encouraged me to devise a birth plan because of the size of their medical center.  She took on the responsibility of distributing the plan to all of the appropriate personnel.  It helped to make the floor very aware of my situation, so that they could be somewhat familiar with what we wanted for Regan.  I approached the delivery with a very open mind.  I had the attitude that I was not going to be upset if the birth plan was not perfectly executed. The staff did a wonderful job, and I will at a future date tell you how I recognized them.   My husband and I welcomed medical students to be present during the delivery.  Please take this into consideration.  The more physicians exposed to Trisomy babies the better.  In the future, he or she may be a great asset to a Trisomy parent.

Obviously, everyone is going to have different scenarios, but my birth plan can be used as a template for your individual needs.  Try to be very specific; leaving gray areas opens doors for confusion.  A great template can also be found at http://www.perinatalhospice.org/Birth_planning.html

My physician had warned me after reviewing my plan that some of my plans may seem contradictory to some of the staff.  For example, why did we want eye ointment if we weren’t going to resuscitate?    He just didn’t want me to get upset if some of the personnel presented me with questions relating to these matters.  I had reasons for everything, and told him I wasn’t concerned with the staff’s personal views on my theories.  None of the above occurred, but please be prepared if it does.  Please be aware that medical personnel consider suction/rubbing of babies as a form of resuscitation.   I had always thought that resuscitation whether it is full or limited was considered only to be CPR/ambu bagging/intubation.  This was an error on my part.

Parents:  Elliott & Patti Lawson

Baby:  Regan Adeline

Date of Induction:  Thursday November 4, 2010

Approximate Gestational Age:  36.5 weeks

OB:  Dr. Micah XXXX

Neonatology Consult:  Dr. Nicolas XXXX

At approximately 20 weeks our daughter Regan Adeline was diagnosed with Full Trisomy 18.  We have had several months to process this information, and have prepared an outline of her birth to help the staff provide the kind of care that we desire.  This is a very difficult time for all of us, including you, as you work to support us and care for us through this part of our journey. We have tried our best to prepare for this short, but precious time with Regan.

Birth

  • Short and to the point.  I do not like pain, and would like an epidural.

  • I have tested positive for Group B Strep.  I would like to be given the standard Penicillin protocol.  This has been cleared through Dr. Micah XXXX.  If Regan lives longer than expected, it is our wish that she passes from the Trisomy, and not an infection.

  • We wish to not have her heart monitored during labor and delivery to minimize the anxiety for the staff and us.

In the Event Regan Is Born Alive

  • We have chosen comfort care with the following guidelines.

  • We do not wish for any sort of resuscitation.

  • We would like Elliott to cut the cord.

  • We would like her to be given routine care that would be given to any normal newborn (i.e. suctioning, rubbing, oxygen, eye ointment).  We would like this done as near to us as possible.

  • Please postpone any other procedures including weighing, measuring, footprints, etc. until we are ready to have them done.

  • We would like Neonatology to be called for assessment if we feel Regan needs further help for comfort measures.

  • We desire for Regan to suffer as little as possible. Oxygen and pain medication should be given to her in the least painful and intrusive way possible. At this time, we request no IVs be used, though we may change our minds later.

  • We would like to bathe and change her with items I have brought from home.

  • We would like her to be baptized.

  • We would like Jesse XXXX, coordinator from Now I Lay Me Down To Sleep, to be contacted so we can have some photos taken.  She will be expecting a call.

      • Contact Info:  XXXXXX

      • Cell:  XXXXXXX

  • We may want family to visit, including our 4 year old son Braydn.  We hope to be given some latitude on the rules regarding visitation.

  • If Regan lives longer than expected, it is our wish to feed her with breast milk/formula.  We do not wish for sugar water.  We would like to attempt the easiest methods first.  (Bottles/Haberlin Feeder)  We understand that babies with Trisomy may have sucking/aspiration issues.  If these attempts are unsuccessful we would like an NG Tube placed.  This all has been previously discussed with Dr. XXXX  It is very important to us to provide our daughter with nutrition given the circumstances at the time.  We hope the staff provides us with 100% cooperation on this matter.

  • If Regan survives past my allotted time in Labor & Delivery – we wish for her to room in with us on the post partem floor.

  • Our ultimate goal is for her to not have to go to the NICU.  If she must go to the NICU for further comfort measures, one of us would like to accompany her at all times.  If she has to remain in the NICU to keep her comfortable – we would like to use the room in the back of the NICU for recovering mothers, if available.

  • If Regan survives long enough to be discharged, all hospice arrangements have been previously made through XXXXXX from the Palliative Care Program.  Her contact information is: XXXXXXX

In the Event Regan is Born Still

  • We do not wish for any sort of resuscitation.

  • We would like Elliott to cut the cord.

  • Please postpone any other procedures including weighing, measuring, footprints, etc.

  • We would like to bathe and change her with items I have brought from home.

  • We would like her to be baptized.

  • We would like Jesse XXXX, coordinator from Now I Lay Me Down To Sleep, to be contacted so we can have some photos taken.  She will be expecting a call.

  • Contact Info: XXXXXXXXX

  • Cell: XXXXXXXXXXXXx

  • We may want family to visit, including our 4 year old son Braydn.  We hope to be given some latitude on the rules regarding visitation.

  • We would like to keep Regan with us for whatever amount of time that we need.  We will contact the staff with any needs that we may have.

  • We do not wish for an autopsy to be done.

  • Funeral arrangements have been made prior to her birth.  Arrangements have been made with:

Kish Funeral Home

XXXXXXXXXXX

We both thank you for your cooperation & support regarding our wishes.

 

 

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