Parents: Christine and Paul
Hometown: Huntington, New York
July 26, 2002 – September 26, 2002
Grace Anne’s Story
“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? 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.”
After having a bad AFP test, Chris had a Level II ultrasound at about 19 weeks. Having seen some markers on the sonogram, the attending physician called Paul and Christine into her office and explained that it looked very likely that their baby had Trisomy 18. She suggested they get an immediate amnio so they could make their decision, but Paul and Chris already knew that termination was not an option for them. Chris remembers, “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.” And that proved to be very important as they traveled this hard path.
The genetic counselor they were referred to emphasized how horrible and fatal this condition was. Although they offered a lot of support if they chose to terminate, the hospital was not really equipped to support a couple that decided to continue a pregnancy with this diagnosis. When they were offered spiritual guidance from a priest, Paul and Chris accepted the offer. Being Catholic, they thought that a priest would encourage them in their choice. To their surprise, he focused on how hard it would be to continue a pregnancy like theirs, how hard it would be to carry this sick baby to term. He also said that because these babies are so sick – there would be a lot of suffering. They were expecting the priest to give them encouragement, support and resources. Instead, he told them they should pray for a miscarriage. They left his office without any resources, feeling alone and helpless. Chris writes, “This was truly the darkest day.”
They did find support from Chris’s OB who respected their decision to continue the pregnancy. He suggested they get an amnio so they could plan for the birth. This made sense to Chris, so they scheduled the amnio for 25 weeks to confirm the Trisomy 18 diagnosis. Despite his support, her OB had never delivered a baby like this. At that time Chris realized that she and her baby were going to be pioneers – and they had a lot to teach the professionals. Their local hospital had never dealt with such a case. Most babies like this were born in the university hospital, but they wanted Grace to be born in the local hospital close to home because they were told she would only last a few days.
Her OB told her to write up a birth plan, which she did after much research. When he got the amnio results confirming full T-18 several weeks later, he told her that they were dealing with “only one patient now”. He also said that they would now have a regular delivery instead of a c-section. (Before Grace was diagnosed, they had planned to deliver her by c-section because Chris had two previous c-sections) Also he said it was no longer important to monitor her. Chris left the office feeling uneasy; her doctor didn’t understand their wishes. She called another doctor in the area and told him she thought her OB wasn’t on board to do this and that she wanted to switch to him. He said he would talk to her OB and to give him another chance. She went to the next visit prepared to fight for what she wanted. She 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!” And this time, having talked with the other doctor, he understood and was ready to support their decisions.
From that point on, her OB fought for her and Grace, and all the decisions they made revolved around maximizing the chance of having a live baby. Afterwards, he told them he would never be the same. Grace had a profound impact on all the doctors that worked with them, as they wrote the protocol to prepare for her arrival.
In order to do all this Chris needed support. Having found few resources from the medical community, or from the local church, she sought them on her own. She soon connected with a group in Canada called “Morning Light Ministry”, where she got spiritual and practical guidance to carry Grace to term. Once connected to this support she realized for the first time that she was not alone.
Before Grace was born they had to make decisions about life support for her. They went through several scenarios: if she is pink, if she is blue, if she is breathing on her own, if she is not. They 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 them. “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 hypoplastic left 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.”
Grace Anne was born July 26, 2002 by elective c-section. Chris recalls it as “the scariest day of my life.” 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. 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 doctors had painted for me 4 months before -she was just a little sweetheart.
”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.
”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.”
After a week, they discovered Grace’s heart defect was slightly different than that original diagnosis. Instead of hours, the doctor told them they might have her for weeks or months. At that point, Chris 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 them so they would have a private place to be with Grace each day. Paul and Chris learned how to tube feed Gracie, and do everything for her. She would occasionally stop breathing and she had some seizure activity. They worked closely with Hospice to arrange bringing her home, which they did on her 1-month birthday.
Once she was at home, they fed her through the OG tube. She had periods of apnea, sometimes up to 15 20 minutes, but she kept coming back. Chris writes, “That is why we started calling her ‘Amazing Grace’. We weren’t 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.
”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….”
As the weeks went on, her seizures and apnea increased. They got used to it. They took her to Grandma’s, the mall, the park and we took several walks around the block. They tried to make it as normal as they could, but she was getting sicker. Chris recalls, “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.”
As the weeks turned into months – they thought that maybe Grace was going to be one of the 10% that survive. However, Grace’s seizures were getting more prolonged and frequent. “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.
“At 10 o’clock on her 2 month birthday – we sang happy birthday to her. I kept holding her – and she must have slipped away shortly after that. We held her and cried. 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.
”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 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 doctors 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 me 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”.
”I am one year past the loss of my daughter. I remember when we first got the bad news, I thought I could never get through the next minute let alone a whole year. It has been a hard year, but also one rich with good things and good people. I am in a peaceful place and have worked hard on my grief, deliberately. I feel my daughter all around me. Her memory gives me comfort and peace. I have absolutely no regrets. My family is healing as well. I learned more about my self and the things that are important in life in the last year than in my previous 40. Grace taught all of that and more in her 2 months here. I am a better person for having her. Those that met her feel the same way too.
”Reaching out to other moms who have experienced trisomy 18 makes me feel like I can offer something valuable to those who come after me. Getting the message out that you can carry to term and that there are resources out there is my daughter’s mission. I have spoken at a Conference. I may speak again. This is all part of the healing and part of making sure that her memory lives on. I don’t know what the future holds…but I know it is one filled with faith, love, hope and a sweet baby girl named Grace.”