See Praying for a Miracle/Planning for a Funeral to see more background on how I came to this finalized birthplan.

I am posting my finalized birth-plan here. Although this is specifically a birthplan for a baby with Trisomy 18 and hypoplastic left heart syndrome, it can be used at a birth plan template for any baby with an “incompatible with life” diagnosis.  I found it very helpful to read different birth-plans to serve as a catalyst for our own birth-plan. 

We didn’t know what would happen with Dekar.  We were told he could die at any time in utero, or he could live for a short while after birth.  One phrase we heard quite often was that the diagnosis was “not compatible with life”.  OK.  But we knew God had the ultimate say, and we needed to work with what we were given.  That meant being prepared and ready to give any kind of medical attention and care to Dekar that would help give him comfort during his moments alive on earth.

We knew that the hypo-plastic left heart syndrome would most likely be the main thing that would take Dekar’s life.  But instead of dwelling on his death, I wanted to dwell on his life, no matter how short or long.  If he died in utero, so be it–but I didn’t want to be in any position that I could not make the important decisions.  I didn’t want to have any regrets.  Having a birth plan gave direction to the medical personnel, and gave me peace.  Cortney and I were able to discuss our options.  When he saw that I stated I wanted to give Dekar his bath, even if he had already passed, he didn’t know if he felt comfortable with that.  I was grateful to know that beforehand rather than expect him to be there with me and discover that he didn’t want to do it.  Being of like mind with the spouse is very important during a situation such as this.

The way I came to this finalized plan was something that didn’t happen in one day.  I started with simply keeping track of ideas in a Works document.  As time passed, I added and deleted and improvised.  I met with the doctors and showed them what I was planning.  I asked them for their opinions and advice.   I am SO glad I met with one of the doctors, because I discovered I did NOT want him to be the one caring for my son.  I was able to find a new doctor that I was comfortable with and who shared a common outlook and goal.  I read birth plans from other parents who had gone through this diagnosis (trisomy 18) before me, I spoke with a hospice worker, and grief coordinator. 

You will see that Dekar’s care was not all I looked at.  I also wanted to have a common agreement about my care. 

I chatted with other parents and found out that making memories was an important part of the process.

The last appointment before my delivery, I gave my OB the final copy.   He, in turn, shared it with the medical staff that would be caring for me, Dekar, and our family.  When I went in on the morning of June 27th, 2008, we were all on the same page.  As the nursing staff switched, the nurses went over the birth-plan again, so they understood the situation and our expectations and desires.

Every situation is different, and we all have different ideals and personalities.  A variety of ideas serves to be helpful.  Anybody who needs to can use this plan as a catalyst for their own.  This was OUR birth-plan.  Yours may look very similar, or very different.  But hopefully it will serve to help give you ideas and clarify your desires to those who are caring for you.  At the very least it will give you an idea of areas you may want to research.

I removed names and phone numbers of some people to protect their privacy.  Please feel free to contact me with any questions.

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Dekar (pronounced “DECKER“) has been diagnosed with TRISOMY 18 and HYPO-PLASTIC LEFT HEART SYNDROME  (I had this in large, bold letters on the top of each page of my plan.)

MARGE’S CARE   

  • Dr. Jeakle and Marge have discussed and agreed to doing a scheduled c-section.
  • Any drugs used should have minimal side effects while still providing pain relief; giving it in the smallest dose that will be effective. Marge wants and needs to be alert and as mobile as soon as possible after delivery.
  • If Marge goes into labor naturally we will still go ahead with a c-section UNLESS things move along too rapidly to adequately prepare for the c-section.
  • If Marge goes into labor naturally and Dekar no longer has a heartbeat, she would like to go forth with natural delivery. Pain control will be a must so that she has the strength to go through with delivery. Again, drugs with minimal side effects are requested so that alertness and adequate mobility will not be an issue after delivery.
  • Please prescribe Tylenol 3 as pain relief after dismissal from hospital.
  • We would like photos taken in the delivery room , if possible, by any nurse that is available.
  • Dr. Mann has agreed to be the physician caring for Dekar. He will be unavailable on the dates of June 19-22. If Marge goes into labor on any of these dates (before planned c-section) then please contact a replacement physician. (Dr. _______ or his fill-in would be acceptable in this situation.)  (Dr. Mann’s contact information: Pager: 000-000-0000 Home: 000-000-0000)
 DEKAR’S CARE

 

  • Please inform us immediately after birth whether Dekar is alive or still.
  • Please perform standard suctioning, rubbing, and vigorous drying to aid in Dekar’s respiratory and cardiac efforts. Positive pressure, bag and mask ventilation may be used immediately after delivery for up to one minute to initiate breathing only, not to maintain breathing. No artificial airway afterward.
  • If warranted, Dekar will be supplied extra oxygen only if it aids in his comfort.
  • We request that Dekar be quickly handed to Cortney or Marge after his birth whether he is alive or stillborn.
  • We want Dekar to be with us, not placed in a warmer, etc. Instead we would like to use warm blankets and/or skin-to-skin contact against parent’s chest.
  • Please allow Cortney to hold Dekar and stay in surgical room as Dr. Jeakle finishes with caring for Marge.
  • Please delay all procedures (weigh, measure, footprints) until both parents have held him and if possible these procedures should be done while the parents are present or holding him. If there are any procedures that absolutely need to be done outside the room, Cortney or Marge will go with Dekar.
  • No Vit K and ointments administered.
  • Whether Dekar is born still or living, Marge and Cortney would like to give Dekar his bath and clothe him at a time they feel comfortable with doing so.
  • No extra-ordinary means should be taken to prolong his life.
  • If Dekar is born alive and conscious and is interested, Marge would like to breastfeed him. If Dekar shows difficulty with nursing or swallowing, we still desire for Dekar is to receive some kind of nutrition. Our first preference is breast milk– Marge would like to express breast milk if he is unable to nurse. We are open to suggestions of other feeding methods which may be easier and more effective for our son.
  • Since we don’t know how long Dekar will live we want to spend as much time with him as possible. If Dekar’s condition begins to deteriorate, we wish to be the ones holding and caring for him at the time of his death.
  • A photographer from Now I Lay Me Down To Sleep has been invited to take pictures soon after his birth. We will keep this a private time with all immediate (children only) family members present for photos.PHONE NUMBERS: ~INSERT PHOTOGRAPHER’S NAME AND CONTACT INFORMATION HERE~ She has been notified of the c-section date and plans on being there to take pictures shortly after Dekar’s arrival.
  • It is very important to us that NOBODY enter the room without knowing our situation and if possible, for us to receive a room somewhat secluded from other delivering parents.
  • Please help us make as many memories as possible by giving us any mementos including bassinet card, hats, baby blanket, hospital ID bracelet, hand and footprints and hand and foot impressions. (We have kits to use.) We would also like several locks of his hair, if he has any.
  • A pastor will be contacted by Marge or Cortney and we will inform nurses about his arrival. If the pastor is unavailable, we may request a church chaplain or the local Catholic priest to come by.
  • If Dekar is stabile, and Marge is released by Dr. Jeakle, we desire to take him home ASAP on comfort care. OR  We would like to be able to remain in the hospital for as long as necessary in order to prevent frequent, early revisits (on the assumption that he survives birth) and as long Dekar requires hospitalization. ??????
  • If we are able to take Dekar home, our hospice contact is P. M.  She may be reached at 000-000-0000(main) or 000-000-0000(voice mail).  Please contact her to let her know the status of Dekar’s outcome.  P.M. will be out of the office from June 16-20th. Her fill-in will be Dr. S. D.: 000-000-0000(main) or 000-000-0000(voice).
  • We would like to have our stay during Dekar’s delivery and Marge’s recovery remain private. We request no phone calls or visits from friend or family members other than our children.
  • If a death certificate needs to be filled, the name Dekar Ezri Schmidt will be noted as his full name.
  • Winchester’s funeral home has stated they are in no hurry for Dekar’s body after his passing and we can keep him as long as we need. Phone: 000-000-0000.
  • We reserve the right to change our minds at any time regarding this birthplan.
 
 
 
 
 
 
 

 

 

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