Grace Anne Nugent's story
Grace Anne was born July 26, 2002 by elective C-section (my other children had also been delivered by C-section). She lived for 62 days. She went to heaven September 26, 2002. We got much more than we ever dreamed.
The diagnosis was made on Grace at about 19 weeks. This was my 5th pregnancy. This was my last try to complete our family. I had 2 healthy pregnancies prior to Gracie. Annie is 8 years old and Kathleen is 5yrs old. Before Gracie, I had 2 miscarriages in the first trimester. Then we had Gracie.
I was 40 years old when we conceived Grace. The AFP came back weird. My doctor called to encourage us to do an amnio. I didn't want to because I didn't want to risk a miscarriage with this pregnancy. So, he referred us to a local university hospital which did a level 2 ultrasound. That was the beginning of the nightmare for us.
As I was on the table having the ultrasound (clutching my rosaries, by the way) you could tell there was something not right. The doctor got real quiet and then she went to get the attending physician. She said they had found some "findings". My heart dropped. I grabbed my husband's hand harder and started saying some intense Hail Mary's. They kept focusing on the darn hand. I know now they were looking for the "clenched fist" - a marker of Trisomy 18. They were also looking at the heart. Something was wrong there too. All I remember is the shock I went into. They are saying a million things and you can't hear any of it. You want it all to go away. It is completely unreal. How can this be happening to us. We just had a perfect baby and now you are telling me she is a "fetus with a fatal defect". What the hell does that mean?
Our world came crashing down around us in a matter of minutes. Our baby was no longer our baby, instead in the medical community she became a "fetus with a defect". From that point on we were in for the fight of our lives and our baby's life. We were under attack as soon as they told us there was a problem. We said that termination was not an option for us. They (medical personnel ) looked at us like we were from another planet.
The attending physician called us into her office and explained that from the sonogram that it looked very likely that we had a Trisomy 18 baby. She suggested we get an immediate amnio so we could "make our decision". One thing my husband and I kept repeating was that termination was not an option for us. Whatever our baby's problem was, we would see her through it and love her in spite of her it. My husband said to me when we first found out- Chris, we are going to have pain either way we go but if we have the baby and let nature take its course we won't be guilty about it -we will eventually get over it. He said, "I know you, if you terminate, you will never sleep another night in your life". I looked at the calendar and saw 4 more months of an uncertain pregnancy and began to cry. He said, we will take this one day at a time, we will do this together. I never loved him more than the day he said that. I knew that no matter what the doctors said, we were together on our decision. The medical staff didn't understand us. The attending physician sent us to the genetic counselor that was affiliated with the hospital.
Things went from bad to worse. The counselor emphasized how horrible and fatal this condition was. We told her that termination was not an option for us. We got the response, " Are you doing this for religious reasons?" They did not know what to do with a couple who decided to continue a pregnancy like this in spite of the diagnosis. I asked her if she had any support for me. She said she would get back to me and give me the name of someone who had a child like this. I am still waiting.....
She said there was a lot of support if we terminated, she offered us nothing to continue with this pregnancy. I was shocked. The doctors and medical people at the big hospital didn't get us. My baby and I were under attack. Their goal was to have us terminate before 24 weeks. They did not give us an ounce of hope or support. We scheduled an amnio for the next day. But then we cancelled it. I never went back. The thought of going back was like going into hell.
She asked if we wanted to see a priest. I thought that would be a great idea. I was looking for spiritual guidance to encourage us to continue. She sent us to a priest out east from where we were. Aha! I thought, a priest will tell us what we are doing is good. All the medical people acted like we were crazy to keep our baby. My husband and I went to see this priest. Boy, were we in for a shock! He sat us down and basically told us how hard it would be to continue a pregnancy like ours. "You know you are going to get bigger and bigger each day Chris, it is going to be very hard to do this". He also said that these babies are very sick- there will be a lot of suffering. I couldn't believe my ears! I was expecting the priest to give us encouragement, support and resources on how to do this. Instead, he told us we should pray for a miscarriage and he told me how to bury my baby. We left his office without any resources, alone and helpless. This was truly the darkest day.
My OB was much different. We finally saw him a few days after the ultrasound. I did not want to be pressured any more. MY OB respected my decision to continue the pregnancy and said that he would support us. He suggested we get the amnio so he and I could plan for the birth. This made sense to me, so I scheduled the amnio for 25 weeks. That way the pressure was off. It was just to confirm the Trisomy 18 diagnosis.
My OB was in for an education. He had never delivered a baby like this. What I realized, was that my baby and I were going to be pioneers - and we needed to teach the professionals who were dealing with us how to do this. My local hospital had never dealt with a case like this. Most babies like this were born in the university hospital. I wanted Grace to be born in my local hospital close to home because we were told she would only last a few days.
My OB told me to write up a birth plan which I did after much research (Morning Light Ministry was able to give me some sample birth plans from other parents.)
Several weeks later, my OB got the amnio results confirming full T-18. He told me that he knew we were dealing with "only one patient now". He also said that we would have a regular delivery instead of a c-section. (Before Grace was diagnosed, my previous children were C-sections and she was going to be one too). Also he said it wasn't important to monitor her. I left the office feeling uneasy. He just didn't "get it". I called another doctor in the area who is known as a "pro-life doctor". I told him I thought my OB wasn't on board to do this and I wanted to switch to him. He was friends with my OB, and told me to be patient - that he would talk to my OB and to give him another chance.
During the next visit I was prepared to fight. I grabbed the doctor by the shoulders and said, "Look what you said to me last week doesn't feel right, if you don't see me and my baby as 2 patients -I can't work with you!" He said, "I know, I know, I talked with Dr. S. and he told me that you called him. I understand, I had it all wrong. All you want is to hold your baby for 5 minutes. You tell me what you want and I'll do it."
From that point on, my OB fought for me and all the decisions we made from that point on revolved around maximizing the chance of having a live baby. He came along for the ride. He told me he will never be the same. Grace had a profound impact on the doctors that worked with us.
My OB took my birth plan and distributed it to all of the nursery/ob staff and had meetings with them to plan the delivery. I met personally with the Head Nurse of Labor and Delivery as well as with the Head Nurse of the Nursery, Neonatalogist and VP of the Hospital before Grace was born. Much planning went into her arrival. As the nurses told me, "Chris, there wasn't a protocol written to do this kind of thing before Grace was born. You wrote the protocol and now we know we can do this..."
In order to do all this I needed support. I did not get any resources from the medical community, nor did I get it from the church. Instead, soon after the diagnosis, I contacted a group called the Sisters of Life. They connected me to a group in Canada called Morning Light Ministry". I got spiritual and practical guidance from Morning Light Ministry to carry Grace to term. I had to hunt for and research these groups on my own. I really would have appreciated getting this either from the genetics counselors or the priests I talked to in the first days.
Once I connected to this support I realized I was not alone. It is unacceptable that there were no resources provided to me when I made my "choice". It seems that the medical community only sees one side of this issue. That is not right. I was just sent home to have my child with nothing. Hospitals need to provide support for women choosing to continue a pregnancy in spite of an adverse prenatal diagnosis. I think Grace brought that to my hospital's attention. The medical community should support women like me too. Even if we are rare, we are out there.
Before Grace was born we had a big meeting with all the people in the hospital that would be involved with Grace: Head Nurse Nursery, Head Nurse Labor and Delivery, my Obstetrician, Social Worker, VP of Medical Affairs,and the Neonatalogist. Some of the decisions we needed to make had to do with life support for Gracie. They went through several scenarios: if she is pink, if she is blue, if she is breathing on her own, if she is not. We made the decision for comfort care only. No respirator, no ventilator, a little ambu bag to get her started if needed. In addition, there was discussion on when to sign the DNR (Do Not Resuscitate) order. This was very difficult for us.
How do you sign a DNR on a baby that isn't delivered yet? The discussion included our wishes that nothing extraordinary be done for her. We had the information that she had a left hypoplastic heart. So, we were anticipating only 3-5 days with her, tops. These are decisions no parent should ever have to make. I know as we were crying in the meeting, that Grace was kicking me harder than ever. Almost, as if to say - I am still here....keep fighting for me.
We received complete support from the labor and delivery staff. They met with me and went over every part of my birth plan. They went out of their way to accomodate our wishes. I remain impressed at the level of compassion and the professionalism the staff showed us during our stay. They also had never had a baby or situation like this in the hospital. We were all very aware that we were all doing this for the first time.
Birth was by scheduled c-section, it was the scariest day of my life. I knew as soon as she came out of my body -the clock started to tick. Time was running out. I was prepared for a very short life for Grace. I even thought that maybe her time inside me was all I would get. I cherished every kick and move she made. I honestly thought I was going to die on the delivery day - just because we expected the worst. No one gave us much hope. It turned out so much better than that.
The hospital had prepared so well for us it was unbelievable. We had about 25 family members anxiously awaiting Grace's birth. The hospital provided a private room for the family to gather. We had our priest available to do an emergency baptism if needed.
They provided us with the most wonderful nurse. She held my hand. The whole staff was informed and knew our situation. In fact, certain personnel volunteered to work our case because they were so touched by our situation.
We got the best of care. I remember shaking from the nerves, the nurse just held my hands. I remember thinking she was an angel. I couldn't stop crying. My husband came in and we both just cried and cried.
When the Ob took Grace out, he said, "It's a girl and she has a lot of dark hair." then "She looks pretty big.". The best news was that she was pink and breathing on her own No respiration was needed. She was a little fighter.
They brought her to me and I fell in love. She was beautiful.....The priest went to tell my family the good news. Everyone couldn't believe she was alive.
We were all celebrating --Grace was alive!
It was the happiest day. I was on a high that she was alive, I didn't care what was ahead I just knew I had my precious daughter and she was mine. I didn't let her go.
The hospital provided a private room for my husband and I and the baby. They allowed our whole family to come and visit any time. The regular rules didn't apply to us.
The staff came in to care for Grace. She couldn't suck so they put in an OG tube. I held her constantly the first 3 days. I remember being up all night with her the first night. I wanted to memorize everything about her. When the sun came up, I thanked God for giving me another day with her. For anyone else doing this, I suggest rooming in with your baby and husband. It was like home. We called it "the apartment".
After 4 days in the apartment (we had ice cream parties and visitors - it was like a big celebration in fact the staff got very friendly with us and would hang out with us when they could. We formed a bond with the medical staff beyond what we had imagined. In fact the doctors and nurses that worked with us are still in touch and have told us they will never be the same after working with Grace and our family.
After 1 week, we discovered Grace's heart defect was slightly different than that original diagnosis Instead of hours, the doctor told us we may have her for weeks or months. At that point, I had to leave the hospital and Grace stayed in the nursery. That was very difficult.
The nursery staff set up a room inside the nursery for us so we would have a private place to be with Grace each day. This became known as "the office" because I would get there around 9 and leave around 5 (on a short day!). The office was where Paul and I learned how to take care of Grace. It was a small room, but hundreds of people were allowed up to join us, hold and love Grace.
We learned how to tube feed Gracie, and do everything for her. In the office, she would occasionally stop breathing and she had some seizure activity. We worked closely with Hospice to arrange bringing her home.
I chickened out the first time (about 2 weeks into it) - she had a severe seizure and they were about to pronounce her gone. I thought, "Hell, I can't do this in my living room with my kids - am I crazy?" But, 2 weeks later we got used to it. We brought her home on her 1 month birthday. The nursing staff was so great to us - they even let us take a hospital bassinet home for Gracie. That was a great day!
Grace had some slight dysmorphic features. She had lowset ears, clenched fists, rocker bottom feet, and a bit of a slope to her forehead. Looking at her, she just looked like a small baby - 4 pounds, 8 ounces-18 1/2 inches long. She looked like my other girls, just smaller.
All of her little things made her special to me. I didn't see Trisomy 18, I just saw my precious little girl. That is what most people realized when she was born. She wasn't the monster the doctor's had painted for me 4 months before -she was just a little sweetheart. All she needed was love. Boy, did she get it!
We chose comfort care for Grace. Feeding her through the OG tube. She would have periods of apnea. She kept coming back from them, even if she stopped breathing for 15-20 minutes. That is why we called her "Amazing Grace". She was supposed to go to heaven in 3 days from her heart defect - she didn't. She had multiple episodes involving apnea and seizures - but she kept bouncing back. The Trisomy affects the brain and a lot of the "automatic" responses like sucking, breathing, etc. Other than that, we thought she was perfect.
We werent' going to do anything to interfere with her condition to extend her life. We kept her as comfortable as we could. We held her when she had apnea and just talked to her. "Come back, Gracie" we said over and over again. She listened to her parents most of the time on this one. We couldn't fix what was wrong. We could only love her.
I was blessed to have Grace in this hospital. She was the only baby in the special needs nursery during her month in the hospital. She got the best care. The nurses were outstanding. I have never seen anything like it. Grace became a celebrity. I met such wonderful people, I will never forget them.
We took Grace home after 1 month in the nursery. At first, I was terrified to bring her home. I insisted that Hospice get all the monitoring equipment, oxygen warmers, etc to make my home like the hospital. We wanted a full time nurse. I was scared. The first night at home we had a home health aide assigned to us for the night. We sent her home early. We really didn't need her after all.
Paul and I realized we already knew what to do for Grace, from all of our time in the hospital. We had been feeding, changing and monitoring Grace in the hospital. The nurses taught us everything we needed to know. Now we were just doing it in our living room! The pulse oximeter was driving us crazy beeping all night. That lasted about 4 days and then we took it off her.
The best part of being at home was that we were a family. I got to be Grace's mommy in my home. Her sisters could really get to know her. It was harder in the hospital for them. It almost felt like having a regular newborn at home. It was just that she fed from a tube and she would stop breathing sometimes.
We got very comfortable. I would do the night shift and she and I would have quiet time to ourselves at night. I would sleep in the living room on the couch with her on my chest. We would watch the moon and the stars move through the sky. It was magic....
We had many visitors - everyone wanted to hold "Amazing Grace".
As the weeks went on, her seizures and apnea increased. We got used to it. We took her to Grandma's, the mall, the park and we took several walks around the block. We tried to make it as normal as we could. But she was getting sicker. She did put on a bit of weight and looked so cute. She enjoyed her bath that her grandmother would give her. She was a joy.
Hospice was a tremendous support. The nurse was on call 24/7. She would come as often as I wanted. In addition, we had a nun, a dietician and a social worker supporting us throughout our time with Grace What we realized was that we were very good at taking care of Grace. We wanted things to be as normal as possible- we really didn't need a lot of nursing care - we were the nurses. We did have a volunteer come in once a week - so I could spend time alone with my 2 other girls. If anyone brings a baby like this home, Hospice is the way to go. They were great.
As the weeks turned into months - we thought that maybe Grace was going to be one of the 10% that survive... I started to look into early intervention and had started to talk to a mom who had a daughter with T-18 who was 6 yrs old. I was ready for the long haul. Whatever it took I would do it.
Grace was a child that required only one thing-to hold her was to love her. She was quiet and non-demanding. The most fragile little thing. She had beautiful big blue eyes, and soft, soft skin. When we held Grace, we were truly holding an angel.
We had one visit to my regular pediatrician. He was OK. We dealt with him with the seizures as well -he was very cautious.
Grace was on phenobarbital for the last week of her life. Her seizures were getting more prolonged and frequent and we were trying to regulate them with this medication. She also required some mylanta for reflux.
I prayed to God for 2 things before Gracie died. I prayed that it would be peaceful and that it was something I could do with my other 2 girls. God heard my prayers and was more than merciful... The week before she died her seizures were getting more frequent and prolonged. We had her on phenobarb to try and regulate it. I thought it was going to work.
We got used to the greater seizure activity. As much as I knew in my head her condition was fatal, I never gave up hope...she was a miracle....
The night before she died - I was up with her all night because she kept going in and out of breathing episodes. I was very calm - I didn't even wake my husband up. I read the Bible and slept with it under my pillow, with Grace on my chest. I read the 23rd Psalm with her. I felt at peace.
The next morning, my husband looked at Grace and we both thought it was bad. We had the girls kiss her goodbye. I put them on the bus. When I came back - Paul looked worried - we gave her a bath - she always loved them. I dressed her and put her special lavendar cream on her. My parents came over with the Eucharist and we blessed her with it. It was 10 o'clock. Exactly her 2 month birthday - we sang happy birthday to her. I kept holding her - and she must have slipped away shortly after that.
I noticed she wasn't breathing - but I thought her heart was still beating - she was still warm. My dad thought she was gone - I didn't think so....The hospice nurse came in and asked if she could take a listen. It was then that she said she was sorry. I couldn't believe it...I went into the kitchen and told my husband she was gone. We held her and cried. My sisters and sister-in-law came as well as my in-laws. The hospice team came - it is all a blur.
Paul went and got the girls from school and we all spent time with Grace. The girls held her and said goodbye. It wasn't scary - it was beautiful. We dressed her in a christening gown. And we all held her. I didn't think I was ever going to let her go. We had Grace with us for a long time.
Finally, I said we could call the funeral director. He sent a special man into our home - it was like I was talking to Jesus - he said the kindest words to me so I could let Gracie go. I gave Grace to Paul - and Paul gave her to the man. As quietly as he arrived, he left. Paul, the girls and I went up into the tree house to be alone. I cried and cried.
Grace passed away Thursday, Sept 26, 2002. Her funeral was Saturday, Sept 28, 2002. This was also my birthday. I had planned a lot of the funeral before she was born because we didn't think we were going to get any time with her. We picked the readings and music out with our priest. We made 2 large posters from all the pictures we took. It showed all the people that held Grace. In every picture, people are smiling.
The church was packed. I don't even think I will ever know how many people attended her mass. The priest said the most important thing, which is that my husband had said that we took the easy road, we loved Grace. The priest also said that we knew this day would come for the last 9 months but we chose to love Grace anyway.
We have no regrets. We know what she looked like, smelled like and felt like. I wore pink to the funeral - I wanted to celebrate her life. When we went to the burial, my brother-in-law read a poem and we released a dozen pink and white balloons.
I go to her gravesite often. It is hard to believe she is not physically with me any more....She is definitely in my heart. I am forever changed.
I have always relied on my faith in God to get me through tough times. I was raised Roman Catholic and have a strong faith. I knew when we chose to keep Grace in spite of her condition that God was going to take great care of us. He provided more than I ever hoped for. He was kind, merciful and made our experience better than we planned. My faith is stronger for having Grace. Nothing happened by accident, He put all the right people with us (including the Sisters Of Life and Morning Light Ministry) and took care of us each step of the way. As hard as this whole thing was, He was our rock, and I will continue to trust in Him. Our experience with Grace was 90% wonderful, 10% the hardest thing we ever did. Without faith, I don't know if we could have coped with all of this.
Grace brought out the best in people around her. She was the most helpless creation - she brought out the goodness of people. My husband and I say again and again that people are good. Grace provided an opportunity for many people who we knew and who we didn't know to love unconditionally. People couldn't do enough for our family. The hospital bent over backwards for us. My friends and family continue to support and love us. Grace touched many, many people in her short life. She did more in 2 months than some people do in a lifetime. She was pure love, and she experienced pure love. As much as I miss her, I know she completed her job here. Her impact goes beyond us. I thank God he blessed us with her. She was worth it all.
The doctor's that worked with us told me they will never look at a case like this the same again. Grace is a teacher and a pioneer. She brought my husband and I closer together, made our faith stronger and made me appreciate all of the good things I have in my life. She also showed me that death is peaceful. My 2 other little girls know that too. Grace was truly "amazing".
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