This is the story of our precious baby boy, who was diagnosed prenatally at
17 weeks with a fatal chromosome disorder called Trisomy 13. Although
Jonathan's condition is considered "not compatible with life", we desired to give
him every chance at life. Our prayer is that those who are touched by our story
are drawn to God, who is Life Himself. John 14:6

To start at the beginning of our story, click here.


more about last week's opportunity

after receiving a blog comment and a couple of other inquiries about what i actually spoke about last monday regarding suggestions to help a grieving patient, i decided to write about it. 

here is most of what i spoke about:

first and foremost, i was very appreciative of the opportunity to be able to share my story and that the hospital was genuinely interested with learning how they can improve communication and care concerning a grieving patient. 

monday was also jonathan's 4-month birthday, so it was a privilege to be able to share my story on that day.

i gave a little background of when jonathan's story began unfolding.  you can read that here if you are new to this blog.

i talked about our visits with our specialist, dr. thorp at sacred heart hospital in pensacola, and with our genetic counselor, beth allen.  on that dreadful day right after i had the amnio done, we met with dr. thorp and beth right afterwards to discuss the ultrasound findings and our plan of action.  it was  a very emotional and tearful meeting for us, as you can probably imagine.  but i will always be so, so grateful that after we told them of our plans to continue the pregnancy, they both immediately expressed their full support.  my regular OB, dr. esses, was also 100% supportive.

i have heard so many stories over the last several months of patients who did not have their doctors' support even though it was their personal choice to continue the pregnancy.  and i am sorry for each one of those stories.  to not have our doctors' support would not have changed our minds.  but i tell you that in that moment, already full of devastation upon realizing the impending death of our child, it would have been doubly devastating to hear anything other than words of support from our physicians.  so i am very, very thankful for our doctors.

our first contact with sacred heart emerald coast began with a meeting with our social worker, dawn, a few weeks before my original induction date.  i did not know what a social worker did in a situation like ours, but after meeting with her, i sure was grateful to have her as a liaison to the nurses for us.  i did a lot of worrying about how jonathan's delivery day would go down, and it was all for naught.  of course, i believe that God orchestrated all the details into place, but i would have felt a lot less anxious the closer i became to d-day, had i met with dawn earlier or had known this service was available to me.  although my situation was rare, i have already become aware of two more trisomy cases after mine in which the baby has or will be born at this hospital.  this service to the patient is invaluable, but in my case i was not aware of the service early enough.  once a patient receives a poor prognosis, this should be a next step; therefore, suggestion #1 was that this service be available to the patient immediately after diagnosis.

i then got to brag a bit about the care we received once we arrived for jonathan's birthday.  here are most of the points i made:

i've mentioned on this blog before how great our nurses were.  they made us feel comfortable from the moment we walked into our room. 

speaking of the room, we were given the huge delivery/post-partum room at the end of the hall so that we would be mostly away from other moms and babies during our stay.  sadly, our room had a card placed near the entrance of the room that depicted a leaf and a raindrop on it which apparently lets the staff know that our visit to the hospital is not under the happiest of conditions. 

if you ever see this on a door in the maternity ward, pray for those inside.

one of the nurses set up all of the keepsake items we had brought as a beautiful display in what would have been jonathan's bassinet.

our social worker, dawn, had ordered a "gemma bear" blanket and presented it to us as an incredibly thoughtful gift.  it's embroidered with the words "child of God."

when jonathan was born, the nurses helped take pictures and video of it so that greg wouldn't have to.  they also taped our families meeting jonathan. 

after jonathan passed away, the nurses helped greg give him a bath.  they were so gentle with him and treated him with such care.  (and when i first heard of anyone doing this for their baby once the baby had passed away, i felt kind of uncomfortable about it and wasn't sure if we would do it.  but it became the most natural thing to do for him.  it was our chance to be parents to him and care for him, even after death.)

our day shift nurse, jessica, stayed past the end of her shift to see us through jonathan's birth and passing.  our social worker, dawn, came back to the hospital after going home to tend to her family and stayed till about midnight helping us take handprints, footprints, etc. of jonathan.  i was just too tired to help, so the nurses wound up doing most of this for us.  here were these educated nurses doing menial things for us such as stirring powder and water together to make clay molds for us.  it was way above and beyond any job description, i'm sure.

that night, after the funeral home came to take jonathan, my arms never felt so empty.  it was then that our night nurse, deja', gave us a donated teddy bear from build-a-bear.  at first, i thought we'd give it to kate as a gift to remember jonathan.  well, this past christmas, greg surprised me by having the recording of jonathan's heartbeat placed into the bear's chest and a recording of kate saying, "i love you jonathan!  miss you!" into the bear's hand so that when you squeezed these parts of the bear, the recording would play.  this bear has become a very important keepsake for us and it was incredibly thoughtful of our nurse.

a week or so later, we received a sympathy card in the mail signed by some of the maternity nurses.

there are things i'm sure to have left out that were done for us in the name of kindness.  but as you can see, we were extremely well taken care of and everyone went above and beyond their duties to care for us.  it was so much more than we could have asked for.

my other suggestion was since there have been other trisomy cases come about recently, it seems to me that there needs to be some sort of perinatal hospice program available in the local area.  unfortunately, jonathan did not live long enough to come home with us.  but at one point in our journey with him, we were told there might be a chance that he could survive up to a month if he made it to full-term.  (this was before his heart and kidneys got so bad.)  our decision, based upon the significant information we had regarding his heart and kidneys, was to not put him through surgery, but to give him comfort care only.  (that alone requires a post of it's own for further explanation.)  if he had lived long enough for us to bring him home from the hospital, then we would have needed perinatal hospice.  currently, it is not available to sacred heart emerald coast patients like it is to those who live in pensacola.

after we took turns speaking, those attending the class were able to ask us questions or make comments.  several people in the class participated in this part.  overall, the response was very positive. 

i would say that the central idea that all of us on the panel agreed on was, what you say and how you treat a grieving patient makes a huge impact on the situation, either good or bad.  it is basically common sense that kindness and sensitivity to the patient during a sad time has the power to bring a little light into some very dark hours.   

i walked out of there with a headache from holding back tears as i spoke, but otherwise i felt very good about the experience.  i also feel that if the Lord brings about another opportunity to talk about our journey with jonathan, then it might be easier the next time around.  i won't be seeking it out of course, so we'll just wait and see what happens.


  1. Thank yo so much for sharing, I wondered what you had to give them and what I hear is praise with a couple of minor suggestions to help those who follow this difficult path. Your courage may make another's journey have what they need, Your messgae is wonderful.

  2. I just stumbled across your blog. I am in tears over the bear. What a fantastic gift, especially with the heart beat included. My son was stillborn November 08 and I really wish I had a recording of his heartbeat.

    Good for you for doing all the work you are doing. I'm doing similar things (you can check my blog link for that) and I think it has really helped in my healing; knowing that I can help others going through such devastation. I has as good an experience at my hospital as possible in the situation but I have heard many stories of women who were not treated wtih such compassion and love. It is my goal to make sure as many families as possible are not made to go through this feeling alone.

    Now to read more of your blog (with tissues handy of course).

  3. It's really wonderful that the healthcare providers around the area (oh, Pensacola! I MISS Pensacola!) are trying to really access resources like you and others who have been through situations so they can continue to make such differences in lives! It's even a bigger blessing that you and your sweet boy can be part of that endeavor for others. Tiny pieces of sunshine in the rain....

  4. Oh Lauren, thank you so much for sharing this. It sounds like you had some wonderful people (and an awesome God!) surrounding you guys through that difficult time.