Pregnancy & Diagnosis
This is our story of the birth and death of our little girl, Tricia Jane Lawrence. She was diagnosed with Trisomy 18, a chromosome disorder that can randomly happen in any pregnancy. She is named after her Grandmother and Great Grandmother who passed before her. Tricia comes from her grandmother Nancy Patricia Anklam and Jane from Betty Jane Lawrence. Both were killed in separate automobile accidents when we were in our youth.
After a few years of trying to get pregnant, we were blessed to find our dreams came true at the beginning of December 2010. Since Robert was traveling for work when Kelly found out that they were expecting, she kept it a secret and surprised him with a present upon his return home. What he found when he opened the small box was a positive pregnancy test strip. We were elated to start a new chapter in our lives. This was the first Grand Child for both of our parents as well, so they were extremely excited as well.
Things progressed like a normal pregnancy over the first 20 weeks of our pregnancy… OB-GYN Appointments, registering for baby things, etc. But this all changed on our 21 week check-up and ultrasound.
The ultrasound seemed to take a long time, but as excited parents we were elated to see our little child swimming around on the screen. Once the ultrasound was done, we went in to see our OB-GYN doctor and she informed us that our child has a Choroid Plexus Cyst (aka CPC’s). Having no clue at the time what a CPC was and hearing the word “Cyst” had both of us worried. The doctor assured us that she sees Choroid Plexus Cyst’s in many cases and they are usually not of concern, but she wanted us to see a specialist to ease our fears and worries.
So we set out to see the specialist a few weeks later with some concern of what the CPC’s meant, but with no idea of what it could really mean. Some previous research before our appointment taught us that it has been found as a “soft marker” for some different disorders, but a CPC by its self is typically harmless.
The specialist provided us with similar information before doing the ultrasound, and we were shocked to hear the word termination so much as we reviewed the various scenarios. As she proceeded with the ultrasound, she noted a few “soft markers” (Clenched Fists & Heart Issues) and highly recommend that we do an amniocentesis immediately. Since she had heart issues and would need more research to understand what it would take to resolve, we decided to do the amniocentesis to rule out the possibility of Trismoy 18. We first learned of Trisomy 18 during our conversations with the specialist, and knew that if this was indeed positive that we would need to refocus our attention.
The results of the amniocentesis came back 10 days later and we learned that our daughter tested positive for Trisomy 18. We were both deeply devastated with the news, and canceled all plans for a few days to spend time talking and supporting each other.
As the weeks progressed, Kelly’s belly started to become very large… She was getting comments like “are you having twins?” or as she heard from a stranger that was passing by “WOW, she is really big”. When we went to the OB-GYN for one of our routine appointments, we found that we were measuring +38 weeks, although we were only 34 weeks along. As such, they scheduled us for an ultrasound to understand why she was so big.
At the ultrasound, we found that Kelly was carrying lots of extra amniotic fluid and the baby was measuring on the small side (it was estimated that she was about 4lbs 6oz). We also noted that there was no amniotic fluid in baby’s stomach and she did not appear to be swallowing any.
Making a plan & support
After things started to settle in, we starting re-prioritizing and organizing our thoughts and efforts. Through our discussion with our doctors, we found that there have not been very many cases of Trisomy 18 and many of the medical staff we were going to be working with may not fully understand what we would be going through. As such, we did some research for Trisomy 18 birth plans and put one together for our little girl, using the ones that we found as templates. Below is the birth plan that we used:
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Birth Plan for Tricia Jane Lawrence
Our little girl is named Tricia Jane Lawrence and should be referred to as Tricia. Tricia has
Trisomy-18 as well as a malformed heart; therefore, she is not expected to live very long, if at all
outside her mother’s womb.
We understand there is no “right” answer and that no choice we make will guarantee Tricia’s
life. In order to ensure Tricia has a peaceful, happy and as long a life as God would have
her live, we have prayerfully contemplated and decided on the following birth plan balancing
peaceful comfort and life-sustaining measures.
We request that NOBODY enter the room without first understanding our situation, then ONLY
those necessary or requested will be allowed in the room.
Kelly needs to be as alert as possible during and after the delivery; therefore, any medications
used should have the smallest side effects to both Kelly and Tricia while still providing pain
relief. We request no narcotics be given to Kelly.
If Tricia has a heartbeat at the start of labor, we do not wish for constant fetal monitoring. With
our understanding of her heart problems, the monitoring will probably show she is in distress.
Tricia’s heart rate can be periodically checked throughout labor were it seems warranted.
If Tricia is stillborn, we want her to stay with us for as long as we feel necessary. We ask that
you give us privacy to grieve, without abandoning us. Please encourage us to do whatever feels
right. We would also like to bathe and dress her, as we feel ready to do so, as a family.
If Tricia is born alive, we request comfort care only, no heroic measures to prolong her life.
We would like her to be given routine care that would be given to any normal newborn (i.e.
suctioning, rubbing, oxygen). When she is born we would like to have her placed on Kelly’s
tummy and warmed up using warm blankets and skin-to-skin contact. If she is interested and
able, we would also like to try and feed her (drops of breast milk). We also would like to bathe
and dress her, as we feel ready to do so as a family.
We would like the umbilical cord to be cut by either my husband (Robert) or myself.
We desire for Tricia to suffer as little as possible. Oxygen and pain medication should be given
to her in the least painful and intrusive way possible.
If, for unforeseen circumstances, Tricia needs to leave Kelly, Robert should be holding and
accompanying Tricia throughout the hospital.
We desire Tricia stay in the room with Kelly and not be in the NICU, unless discussed and
agreed upon with Kelly and Robert.
Please take pictures of the three of us after the delivery with a camera we provide.
We request that no autopsy be performed.
We request your help in gathering all possible keepsakes for Tricia including:
her bassinet card
hats
baby blankets
hospital ID bracelets
hand and footprints
lock of hair (if any)
routine newborn hospital pictures
molds of hands and feet (we’ll bring a kit)
We are prepared to let Tricia go when her time comes, even if it is at the moment of her birth.
We ask that our family and close friends be allowed to visit when we are ready for visitors. We
do not want to have set visiting hours, as this may be the only chance the family may get to
meet her.
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 Tricia and want to spend as much time with her as possible. We truly appreciate your
help and support, and ask that you understand if we seem indecisive or even angry at times.
We also appreciate and find great comfort in your expressions of grief, be it through tears or
even humor. So please do not hesitate to cry or be sad in front of us, if that is how you feel.
Thank you and bless your hearts for all your kindness while caring for our family.
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We also had great support from our family and friends as we progressed along. Kelly’s sister changed the date that was planned for the baby shower into a “Spa Day” for Kelly and the baby. Some of Kelly’s closest friends and family were there to help pamper and support her.
We found comfort in reading the stories of other family’s that went through Trisomy 18, from places such as Trisomy 18 Foundation and March of Dimes.
Birth Story
On Sunday July 31st, 2011, we went to visit Kelly’s Sister’s & Husband for dinner at their house. After dinner we took a walk to see their neighbors baby horses. We made it up the driveway where Kelly’s water broke at 7:10pm. Rob quickly ran back to the house, grabbed some towels and the car, picked up Kelly from the neighbors house and headed to the hospital.
As we headed to the hospital, we made out a few calls to our parents which started a calling tree that we put in place to get ahold of the rest of our family. Since our deliver bag, clothes, etc were all at home we had some family members pick that up and bring it to the hospital for us.
We were quickly admitted to a delivery room after nurses were working to mop up the amniotic fluid that Kelly leaked though out the hospital. We spent ~7 hours in the delivery room before Kelly gave birth to Tricia Jane Lawrence at 1:53am on August 1st, 2011. She delivered without any drugs or pain medications and no complications.
Tricia weighed 3lbs 11oz and measured 15 1/2” long. Very small, but so very cute!
Tricia was immediately placed on her mothers chest where we noticed her moving and breathing. We were excited to know that she was delivered ok and was alive. After cutting the cord, we spent some time talking and listening to her. We expected her heart complications to quickly cause her issues, but that was not the case. In fact she had fantastic heartbeat and showed a great chance to thrive. We were so excited to see that she was doing so well.
After a bit, we tired to get Tricia to breast feed, but she did not have the strength to suck so we moved to a dropper to see if she would take some milk. We could tell that she loved the taste of it as she moved her tounge in and out of her mouth as we gave her a few drops. After a number of drops, she started to choke and we found that she was not able to swallow it. Knowing that she would need food we tried to put in a feeding tube to help her, but we were not able to get it down all the way.
So with help from the NICU, we brought in a X-Ray machine to see why the feeding tube would not go down all the way. What we found was that her esophagus and stomach were not connected, so there was no way that we could feed her. We both knew that this was a possibility, but was a hard fact to realize. We were given the options of surgeries to try to reconstruct her esophagus, but knowing how small and weak she was we felt that her chances of survival were small. Also with her other issues (heart issues), we did not want to put her through anymore pain. So we decided to stick to God’s plan and let him decided when it was time for her to go.
We had family join us in the delivery room and we celebrated the time we had with little Tricia. She was held, loved and kissed by everyone. The only time she was not in someones arms was when we gave her a bath, or changed her diaper. Since the father of our church was out-of-town, we had Kelly’s sister’s Father from her parish come to baptise Tricia. It was a beautiful ceremony. A volunteer from Now I Lay Me Down To Sleep came to the room to take photographs of Tricia, Mom & Dad. Although we had lots of photos throughout the time we had with Tricia, it was nice to have some professional photos taken.
Tricia’s Grandpa Gary & Grandma Cathy brought in a Birthday Cake with 1 candle and we sung her happy birthday and all had cake. As evening set in, family said their good-nights so that we could work on getting some rest. We took turns holding Tricia and sleeping so that there was always someone with her. At 1:53am on August 2nd, we sang happy birthday to Tricia as she was now officially 1 day old!
At about 5:10am on August 2nd 2011, Tricia passed away peacefully in her mothers arms. We held her in our arms as we told her that it was ok to go be with God and that we would see her again soon. We bathed her, and casted prints of her feet and hands.
Family came back in the morning to hold Tricia and say they goodbye’s before she was taken to the funeral home.
There was a card left on the delivery room door that summed up our feelings very well. It says this:
An Angel in the book of life wrote down my baby’s birth, then whispered as she closed the book “Too Beautiful for earth.”