Our story of Grace actually begins in June 2002 when we found out we would again be parents - this time with our fifth child. We had John in 93, Paul in 95 and our twins. Patrick and Annie in 1999. Honesty, we were very grateful and excited about this pregnancy, however, it was no question a surprise. I was 37 years old at the time which is very, very, young - except to the OB community - I was over the magical age of 35 and therefore of Advanced Maternal Age where the odds for problems are a lot higher. But everything felt quite normal to me, and busy with the job of taking care of my four kids - I prayed that the next months would be Uneventful!
At my early doctor appointments - my doctor discussed ordering the latest and greatest prenatal tests. My age was definitely an issue. However, I declined all tests as I honestly felt I would be committed to this pregnancy no matter what - but I did agreed to an ultrasound. My doctor recommended that this test be preformed right at 18 weeks - just in case.
The test seemed to be moving along ok, however, it was very long and oddly enough the technician seemed to be taking tons of pictures of my babyʼs arms and legs. After what seemed like an hour, the Tech told me to stay in the room while she “talked to the radiologist” about the babyʼs pictures. We hoped it would be a quick conversation. But Unfortunately - a minute, led to five, ten, fifteen and finally after about 20 minutes she came back in the room.
She asked for a few more pictures of the babies kidneyʼs. And After that, the test was complete.
We didnʼt have a good feeling when we left the hospital that day. And we were not surprised when Our Dr. called later that day and reported to us the the multiple problems we were facing. He read to me the radiology report which stated that
Our babyʼs bones were measuring small for date and the femur bones were curved**
Amniotic fluid level was very Low**
Head was suspected to have an odd shape/and oversized
Kidney, bladder and stomach were abnormally small
In addition, the babyʼs left foot was turned and believed to be clubbed
He added that the report indicated a pregnancy in his opinion - “smelled like chromosomal problems” (due to My Advanced Maternal Age) and I should KEEP MY OPTIONS OPEN
My Dr. referred me to a perinatologist which is specialized obstetrician who deals with high-risk pregnancies and We were lucky enough to secure an appointment by Thursday - September 19th.
THE SECOND ULTRASOUND was performed down at Hutzel Hospital in Detroit. This Hospital and the dr. scheduled to preform the ultrasound both have national reputations and are highly regarded. At this point, We honestly hoped and truly believed that the ultrasound performed at Crittenton was simply wrong and that the specialists at Hutzel would set the record straight. But We were Wrong!
The ultrasound tech performed her work and had the Dr. come in and take a look. She continued her work in very uncomfortable silence.
We watched in pure horror at the whispering between them. Finally, the curved femurs were pointed out to us on the screen indeed confirming what Crittenton had found. We then were asked to take a seat in the office “right down the hall”.
After about 1/2 hour of awkward waiting, the doctor came into the room and informed us of the devastating diagnosis - She said your baby has a "Lethal type of Skeletal Dysplasia” which is a rare genetic condition and is incompatible with life. The dr. said in very plain and simple language “Your Baby Will Die”
She continued to explain to us that a Lethal Skeletal Dysplasia is a rare form of dwarfism in which a babyʼs limbs are extremely short and malformed and the chest cavity is very small. Lungs do not develop properly. As a result, the baby dies from respiratory distress shortly after birth.
While attached to the umbilical cord the baby gets oxygen from the mom and grows. But when the cord is cut, so is the childʼs lifeline.
We were told that there really are only 2. 1. Interrupt or terminate the pregnancy or 2. Continue with the pregnancy with periodic monitoring deciding at some point whether or not to induce labor or allow it to begin naturally. She did explain though that Due to other complications that can arise, many of these babies die in utero sometime during the pregnancy.
Reviewing the Options
We left that day devastated and completely overwhelmed. It took a couple of days to just deal with the news. Literally instantly - Patrick and I went from picking out the nursery, to preparing ourselves, and our children, for the death of a family member. I became Angry at first - realizing that this cross I was being asked to bear was very, very heavy. I felt that it was unfair as I had just lost My Mom a few years earlier to a very sad, and brutal battle with breast cancer. It seemed like too much too soon!
On a beautiful morning, we were simply told of an unthinkable devastation”. However, You - In an incredibly short amount of time, have delivered words of wisdom and a message of hope. I can almost cry when you describe books (When Saying Hello means saying Goodbye) that youʼve already starting reading to help cope with the tragedy. . And while it may seem like too much too quickly, we must not languish in the idle alley of false hopes or worse, denial. We must instead prepare ourselves, our kids and our unborn 5th child, for the sad fate that we know now is at our doorstep....”
We spent most of the following weekend reviewing our limited options.
On Monday morning - I heard a radio show that caused me to Pause. It was an interview with the author of the book “who holds the key to your heart” and discussed the importance deepening our faith in God - and learning to love him not for what he does for us - but for who he is. She also described a story in which she was led to the better understanding that children our not truly ours - they are gifts from God - entrusted in our care.
I felt like Heaven was talking directly to me through that radio program and finally it became very clear to me that there was really no decision that
needed to be made after all. This child inside of me belonged to God and I had no right to decide when that child should return home to him.
But Patrick was wonderfully supportive and we joined together to love our baby for the time we would have her - enjoying her sweet kicks inside of me. We read the psalms in the evening which calmed us and centered our focus.
Later that week, My sister-in-law Ginny forwarded an email to me that she received from a priest friend. She had contacted him looking for guidance to help us with the tough decision we were facing. His response was simply “ God does not value a life in number of years days, or even minutes spend alive here on earth. All life is equally valuable no matter how short and we can never fully understand the impact of one life on all of humanity” This powerful quote became our strength!
But onto the medical side of this decision -
Who would deliver this baby? I went back to my original doctor and asked him to deliver. He politely declined as he wasnʼt comfortable with the situation and even offered a last minute statistic - 90% of people would have made the appointment by now!
I tried to transfer my case to Beaumont, but the high risk practice there was not interested either.
My care was transferred to Hutzel hospital where I entered a fetal assessment program. While there was nothing that could be done to solve the problem, they would follow the babyʼs progress with monthly ultrasound appointments and meetings with a team of doctors which included the perinatologists and Genetic specialists.
At the first visit, I found out the sex of the baby (something we had never done before) and we named her Grace (which means and undeserved gift). On September 27th, 2002, Patrick wrote
“Your dr. appointment today confirmed that “our child” that was not to be, is after all, a baby Girl. And while the future only knows how much -if at all - that will come to “know” her, Iʼm confident that “little Grace Marieʼ will soon be safe with her true father. And while tears begin to flow as I write her name for the 1st time, I must come back to Psalm 23 and remember that she , like us, has nothing to fear. Because the Lord will shepherd our family through the storm and we must not concern ourselves with its elements - harsh, though, as they may be
Psalm 23 again became part of our life when On Sunday, October 6th, in the chapel at St. Maryʼs - I received the anointing of the sick from Father Strain. In a private ceremony with my family present, I cried as Father read the beautiful words of this beautiful Psalm.
Fetal Assessment Program
While in the fetal program and until our pregnancy reach 28 weeks, termination was clearly the main agenda of the meeting.
We stayed the course and avoided the Drs. many attempts to spread doubt and fear. However, it was very, very difficult not to be affected by it.
Graceʼs original diagnosis was validated at each of the next 5 ultrasounds. During one assessment meeting, I was offered a 3d ultrasound. A beautiful, clear image of Graceʼs face was given to us.
It was unbelievable, and WE kept the image on our refrigerator door . It carried us through the tough times and helped us believe in the little life inside of me. However, the GE commercials with the famous song “the first time ever I saw your face” was simply too much for me handle. We longed to meet Grace and hold her even if her time alive was short. We longed for her just the same!
On December 23, I woke up with very scary symptoms. Extreme pain and a severe hemorrhage had us in a rush to the hospital and I believed something could be wrong with the placenta creating an emergency birth situation. I was now 32 weeks along.
Before I left, I quickly wrote and left a note for my other four children as
they were still sleeping
Dear John, Paul, Patrick and Anne
Good Morning! I love you all so very, very, much.
One thing we learn in life is that things do not always go as planned. As so it is Today! I so looked forward to spending this day before Christmas Eve, playing games, having lunch together and getting ready to celebrate the birth of Christ.
But this morning, I woke up with unusual pains and the Doctor wants me to come to the hospital. So there weʼve planned to go. I donʼt know whatʼs going to happen today, but it is likely that your sister will be born. In the perfect way that God has made her, we will greet her with loving arms and a firm embrace. However, her body is different than ours in a way that will make her precious little life very short. We love her just the same. For it is the miracle of life that has brought you all to us and that miracle is the same for her - Sent by God with a purpose for this life - however long or short that may be. Grace will always be a blessing in our life.
I love you all very, very, much. Love Mom
Thankfully, after a day of more tests and monitoring, the Drs. concluded that I had nothing of large concern. Most likely some form of a blood clot. They did recommend, however, that I consider inducing my labor and delivery my baby that day.
Honestly, I just wasnʼt ready. I had spoken to Hospice just days earlier and we both decided that spontaneous labor would be the best way to deliver her. Also, we were faced with the reality that by picking Graceʼs birthday - we were also choosing the day she would die. And we just didnʼt want that decision to be made by us. WE wanted it to be Godʼs decision.
Thankfully, I made it through a very different, an frankly more spiritual Christmas.
At my 6th and final ultrasound assessment on December 30th, 2002, were our Perinatologist, the Director of Genetics, two neonatologists, several residents and a technician. The measurements were so poor, that they stopped the exam after measuring only one side of Graceʼs tiny body. The diagnosis of Lethal skeletal dysplasia was unanimous and they all believed the disease and would take Graceʼs life upon birth. (Predicted life span was 4-6 hours) and a birth plan was formulated with the hospital. Our wishes were as follows:
1. No Ventilation
2. The Baby should be wrapped in a blanket and handed to us. No
3. We wanted our other four children and grandparents brought to the
delivery area (a no kid zone) so they could see Grace
4. And We wanted to have Grace baptized in the hospital shortly after birth
We left that day- made arrangements with the cemetery and started to plan a memorial service. As we waited for her birth, we prayed for strength to endure what lay ahead. The reality of the situation set in when I began to buy milk with an expiration date day beyond the date of Graceʼs expected short life. To honor Grace and to provide a ray of hope to our family, We decided to keep our Christmas lights lit every night until after Grace was born.
We celebrated my twins birthday on January 3rd and I believed that it was now just time to rest and wait for the time to come. Patrick was busy at work preparing for an out to town trial coming up in Arizona.
On January 8th, 2003, I watched Patrick pack for another trip. I struggled with cramping and contractions and finally told him that I could be going into early labor. I was about 35 weeks along at this point. He was alarmed and had me call my doctor who asked me to come to the hospital in the morning to be checked. We pushed back Patrickʼs flight from 9:00 a.m. to Noon knowing we could cancel if we had to.
On the morning of January 9th, with bags packed in case labor had indeed begun - we nervously headed for the hospital. I was hooked up to a fetal monitor, checked by the doctor, who confidently said “You are not in labor, and you are not even dilated. I really do not feel you will deliver until closer to mid-February!” False labor!
Feeling foolish, however relieved, I drove Patrick to the airport to catch his noon flight. The weather was extremely mild for January - 60 degrees and sunny - I drove home feeling an unusual sense of peace and happiness. I felt Godʼs presence and knew then that everything would be ok - not that Grace would live - but that we would be able to endure what lie ahead for us. Things were beginning to happen, though, and I had no idea what was just ahead !
Just like I donʼt think it was a coincidence that when I arrived home that day - My dad and step mom Vicky (who were always there to help) were taking down the Christmas lights that we had planned to keep lit until after Grace was born...
I donʼt think it was coincidence that Patrick's scheduled noon flight sat on the runway until 1:30 p.m. then went back to the gate to De-board. The pilot announced that the flight would be cancelled (not simply delayed) as thick fog had developed in the desert. This apparently happens about once every 10 years. As Patrick would miss his scheduled meeting, he came home that afternoon.
And the biggest coincidence of all - At 11:00 p.m., On the very day that tests showed I wouldnʼt deliver for over a month, the symbolic Christmas lights had been taken down, and Patrickʼs routine flight was cancelled due to fog in the desert - My Water suddenly Broke !! It Was definitely time!!
My Dad and Vicky came to the rescue and we raced to the hospital. We arrived at Hutzel at 1:00 a.m. I labored throughout the entire night. Unlike my other deliveries, No fetal monitor was used as the doctors decided that there would be no emergency C section to save our baby if she were to show signs of distress.
One was From the book of Isaiah he read “ The Lord God will destroy death forever. He will wipe away the tears from all faces; The disgrace of his people he will remove from the whole earth; for the LORD has spoken.”
At 11:19 on January 10th, 2003 - Grace Marie was born. With her arms and legs in the air - and crying - very loudly - our little a4lb. 2 0z. baby girl was here. Doctors went right to work, assessing her vitals, and her breathing. She was giving a little bit of oxygen, wrapped in a blanket and handed to Patrick and I. She was Beautfiul!! We were overwhelmed, filled with joy, and so happy to see her alive!
Knowing that our time with her would be very short, our children arrived at the hospital with my parents. My two sister-in-laws, Ginny and Mary, also came and the rest of the family was in constant communication on cell phones.
We took many pictures of Grace and despite the predictions we were facing, everyone was happy - we were celebrating.
***At about 1:00 p.m.. Grace started a form of respiratory distress called Grunting. We feared that this would be the beginning of the end for Grace. The Neonatologist wanted to send Grace to Children's Hospital for evaluation. After much resistance on our part, We finally agreed.
Patrick accompanied Grace to children's via a long dimly lit underground tunnel where another team of specialists spent the next hour evaluating her. Grace screamed so loud during her tests that Patrick did not even think it was our little 4 lb. baby.
After the tests, Grace was brought back to Hutzel and the team of doctors reviewed the test results.
* Graceʼs Birth condition is completely inconsistent with all of the prenatal
* The Grunting she was experiencing resolved when she screamed a lot of
mucus out of her lungs during her tests
* Her X-rays were complete and showed a baby that while small was
* Her chest and clavicle region were believed to be of normal size
* She was charting in the 10th percentile for height and weight for a 35
week premature baby
* Her feet appeared normal
* Apgar scores were 8/10 after 1 minute and 9/10 after 5 minutes
* The specialists concur that She does not have a skeletal dysplasia -lethal
* We have no medical explanation, however, Grace is a healthy, baby and
we believe she will LIVE
We were in a complete state of shock. I asked my sister-in-law Laura who was there if I had truly heard what I thought. We all just hugged and cried. Family and friends were called and we cried with each one of them. Everyone was stunned by the amazing Grace after all of the terrible predictions.
Patrick and I spent the next 2 days in the hospital with Grace - Just holding her, staring at her. We were so filled with, Gratitude, Thankfulness and an unexplainable joy. The nursing team that delivered Grace returned on an off day to throw a baby shower for her. They all wanted to be part of the miracle babyʼs life.
Since Grace was born and not 1 day goes by when I donʼt think about what happened to us. Her story is a constant reminder that you can never lose faith even when all seems hopeless. I shudder to think of my feelings on this day had we listened to the many specialists who felt “interrupting” this pregnancy was our best option. Would I ever know the truth about my lovely daughter?
And even if the diagnosis would have been correct - the hours or even minutes holding her (just meeting her) would have been easily worth the pain and suffering. Later, may people told us that seeing me carry this baby had affected their lives in ways I would never know. WE are forever grateful that we listened to our hearts.
I have been contacted by many parents (all over the world) that are seeking support in their decision dealing with a similar diagnosis. Some of these familyʼs I only hear from once and although I donʼt know for sure - I assume that they ʻmade the appointmentʻ. With other familyʼs, we communicate throughout the pregnancy and in the majority of cases the diagnosis is sadly correct. But the tests arenʼt always 100% predictive. One family, from Grand Blanc, printed and carried Graceʼs story to their delivery as hope that their lethal diagnosis could be wrong. Their baby did survive and although inflicted with non-lethal dwarfism, is beautiful and living a very healthy and happy life. From that website, an Australian author contacted me and requested that the story be included in her book “Defiant Birth-women who resist medical eugenics” which is a compilation of 19 storyʼs from women all over the world. The Human Life Foundation in New York City promoted Defiant Birth and selected from the book only Graceʼs story to be featured in their quarterly publication - the Human Life Review. I feel it is both my duty & my privilege to share my story whenever and where-ever to anyone who has any interest.
Lets just say - she is certainly a bundle of energy. Other than a few dips off the height chart (currently she is in the 2nd percentile), Grace has been a very healthy child. She is spunky, an attention seeker (like any last child- she takes after my husband), loves her friends and family, and is just full of life. She is 6 years old and a 1st grader at Holy Family School. She gets frustrated at times as she is almost always the shortest student in the class - but it has not stopped her 1 bit. She loves to ski, ice skate, do gymnastics, play barbies, act, sing, and of yes - did I mention how much Grace loves to dance. Ironically, when I was pregnant I dedicated a song to Grace called “I Hope You Dance” by Lee Ann Womack hoping she would dance her little legs off in Heaven. But a little while ago - She was one of the many beautiful dancers who performed for you here tonight. They worked so hard to bring this wonderful dance to you - Thanks for the Dance Girls!