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Steps You May Need To Take To Prepare For Your Pregnancy and The Birth of Your Trisomy 13 Baby

1.  Find a Doctor:  First and foremost you will need to find a doctor who is supportive and sensitive to your needs.  They should have had some experience with Trisomy 13 but it is not necessary as long as they are supportive and can help you through this experience.  They should be able to offer you "normal" prenatal care.  Afterall, this is still a human being and your precious baby and should not be treated any differently.  In fact the physician you choose should be open to what it is that you need to get through this pregnancy with your mental and physical health in mind.
 
2.  Birth Plan:  You will need to make a detailed birth plan after discussing with your partner and doctor (he/she will be able to guide you and you will be able to compromise).  You will need to decide on some things and also realise that these can be changed at any time.   Planing ahead for this can be the most important thing you do.
 
Here is a sample birth plan:

Birth Plan for Kia Lien Emma~Lee Wong

Written by Mom & Dad - March 24, 2004


We know that our baby Kia is very ill and not expected to live very long. We have made an informed decision to carry this baby to term and keep our baby as long as possible. It is our priority and goal to have our baby born alive. Please honour our request to preserve the dignity of our baby's special life.

1.    We would like the labour and delivery to be monitored intermittently to determine if baby is alive or dead, not for wellbeing.

2.   We would like Lorie to have no or very little drug intervention, as Lorie wants to be fully aware.  An epidural is requested. 

3.    We request that our baby be immediately handed to Mom & Dad depending on the circumstances.

4.    We request that if Kia needs oxygen that that be the only extra measure taken. Kia is NOT to be put on a respirator/ventilator.

5.    Since we don’t know how long Kia will live, we want to spend as much time as possible after the delivery with her.

6.    We would like our other children to be present immediately after the delivery of Kia to spend what time she has left with us.

7.    Kia will only be offered compassionate care: feeding, bathing, swaddling and holding by her parents and family.

8.    We will have Kia baptized as soon as possible after her birth.

9.   We would prefer to have a private room on the Woman's Health ward.

10.    We would like to "room in" with Kia. If there are any procedures that need to be done to her outside the room, Mom and Dad will go with the baby.

11.   We would appreciate it if Gaymond could have the option of spending the night with Lorie in her room (and Kia if she is still alive).

12.   If Kia is able to be breastfed we would prefer that. If she cannot, we wish to feed her with expressed breast milk. NO IV’s.  If a feeding tube is needed we have agreed on a nasogastric tube or an orogastric tube but she is NOT to have a gastrostomy tube or a jeujenostomy tube.

13.   If Kia dies, we want some time however long we decide to be together as a family alone.

14.   We would like to bathe/dress Kia.

15.   We would like to have Kia’s pictures taken asap.

16.  We would like as many keepsakes as possible: Bassinet card, hospital ID bracelet, hand prints/foot prints, lock of hair, photos. We would like to make a plaster cast of Kia’s hand and foot prints also (which we have).

17.   There will be NO autopsy performed on her body and she will not go to the morgue.  There can be non-invasive diagnostics done after she dies (eg. bloodwork, u/s, xrays, echo) but NO cutting.

18.   When Kia dies we will contact the funeral home and they will come to the ward to pick her up.

We appreciate your help and support during this difficult time.

Lorie and Gaymond

3.  Get a 3D or 4D Ultrasound Done:  This will give you a better picture of the defects that the baby has.  It will also prepare you, your partner and any children for what you are about to face.  It is nice to prepare any of you for the fact of a cleft lip/palate, extra fingers or toes, clubbed hands or rocker bottom feet.  Sometimes they don't work out due to too little amniotic fluid around certain areas.  But it is worth the effort.
 
4.  Find a Counselor:  Find someone that you feel comfortable with and has some understanding about death.  It's nice to be able to find someone who has dealt with Trisomy 13 but that isn't always possible.  Keep searching until you find someone who can help with your needs.
 
5.  Spend Time Mourning:  Spend some time grieving and mourning the loss.  There is a loss in being told that your child has Trisomy 13, the losses are inumerable to each individual parent, child, family.  Take time to honour your child in ways that have meaning to you.  We each mourned and honoured Kia in different ways.  My daughter made a "Memory Book" for Kia with all her u/s pictures out of a scrap book and after Kia died she continued to make pages from her birth, memorial service, momentos.  Each of the children would say good night and good morning to Kia while I was pregnant.  They spent time with her each day telling her how much they loved her and how special she was to us.  I spent every quiet moment I had feeling her move, and making every moment she was alive count while I was pregnant with her.  She had her own personality and we honoured that.  It is what has helped us deal with her death in a positive way, we made memories while we prepared for her arrival and her death.
 
 

Under Construction

In Memory of Kia Lien Emma~Lee, May 6 - 7, 2004