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Emma came to us suddenly and surprisingly. Since Bess is a Midwife, she knew what might be going on when she started feeling contractions. She called Dawn, her midwife to come see what was happening. Bess was planning her third homebirth, to her 5th child. Her first two were born in a hospital. Dawn arrived and it turns out, Bess was not dilating at all. So, she soon left. Shortly after she did, Bess decided to take a listen to the baby's heartbeat. What she heard was alarming. Her baby's heartbeat was dropping terribly with each contraction. She called Dawn back to her house, called her doctor and Dawn took her to the hospital. Her husband Matt was on his way too. Once at the hospital, the monitor showed the baby looked a bit tired, but no decelerations. Until, a large contraction hit and the baby's heartbeat dropped down to 70 for over 6 minutes. Things moved quickly from there and Bess underwent an emergency c-section, under general anesthesia. Bess's husband Matt, her sister Jenny and her midwife Dawn all waited frantically outside as what was supposed to be 10 mintues stretched to 40, before Mary Kay, the midwife that works with the doctor finally came out, without the baby. She reported that it was a girl, as they suspected, but that she was very tiny and had a lot of trouble being born. She needed prolonged recussitation, but that she was stable right now. Everyone was shocked, at the 2lb 15 oz baby. Everyone thought Bess should of known. Bess kept poo poohing her suspicions just believing everything would be fine, or, if not, it would be delt with then. In other words, that she wouldnt do anything differently if she knew there was a problem. The doctors decided to transfer baby Emma Grace a few hours after her birth to a Level 3 hospital with a NICU. Once there she did well, but noone knew why she was so small. They told Bess they suspected developmental problems, but that is it. They soon heard a murmur in her heart and decided to perform an ecchocardiogram, an ultrasound of her heart. Emma's Daddy Matt, was with Emma through this whole process. He stayed at the hospital with her and protected her and comforted her. Once they did the ultrasound of her heart, they discovered Emma had some severe Congenital Defects. And they decided to transfer her to a All Childrens Hospital in St. Pete, 165 miles from home. They took Emma by helicopter on the evening of day 2, December 3. Dad headed up there too while Mom stayed behind in the hospital, worried sick about her little girl she had never even held. First she was worried about how small she was, and why. Then after she found out about the heart, she was even more worried. On Thursday morning, Dec. 4 Bess was released from the hospital and she joined her husband in St. Pete to be with Emma. The doctors wanted to meet with them right away. They wanted to discuss her condition and the options. |
 
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What the doctors suspected was that Emma had a Trisomy genetic disorder. Except they didnt tell her parents that. They kind of went around the issue and told her parents that they did a genetic blood test to karotype her chromosomes and see if she had a chromosomal anomaly. The nurse let it slip they suspected Trisomy. Matt and Bess were, of course, in disbelief that there could be even more things wrong with their precious baby girl. However, they knew the main issue was her severe heart condition. They began to push for cardiac surgery. The doctors said they would not do any surgery until the genetics came back, unless it was needed on an emergent basis, and that if she was positive for Trisomy 18, they wouldnt do any surgery at all.
Bess and Matt were alarmed, what do you mean you wont operate because she might have Trisomy 18 or 13? Their baby was sick and needed an operation to start to get better. The cardiologist informed them that if Emma had Trisomy 13 or 18, as they suspected, she wouldnt have any type of life. She would be severely delayed, never walk, talk, or sit up. That it was better to just do nothing and let her go, for her own good.
Bess and Matt began to research everything and push for the surgery. The cardiologists refused to consider it until the genetics came back. Bess contacted two heart surgeons in Miami for a second opinion. They promised to try to help her and they said they would, at least, consider surgery to help make Emma well enough to get home, and go from there. Matt and Bess decided to transfer her to Miami. The care they received in St. Pete wasnt bad, but the communication and compassion were not very good. It was as if Emma was just being held there, until they could figure out how best to be rid of this problem. They rushed the genetics test, once they said they were having her transferred and Matt and Bess confirmed she did in fact have Trisomy 18. Something Matt and Bess already knew in their hearts, and accepted. So, off she went to Miami.
So now she is in Miami Childrens. The staff and doctors are much more open to discussion and they are compassionate and caring. Even though they disagree with Matt and Bess about pursuing surgery. Matt and Bess feel very strongly that they were given Emma Grace for a reason. To love, protect, nourish and nurture her. They feel they have her in particular, because she is special and needs people who are willing to fight for her right to life. That is why they are still pushing for surgery. Dec. 11, 2003, Emma began to have symptoms of heart failure. The cardiologist confirmed it on Dec. 12. Matt and Bess are now pushing even harder for surgery. They know it is risky and they know it is controversial. Many may disagree with what they are choosing, but as Emma's parents, they know they are choosing what is best for Emma. To let her go, would be the easier thing. To fight for her, knowing there is not a large chance of success is the road they have chosen. They strongly believe that every child has a right to life, no matter what their individual potential. No one can say what Emma's potential is. Maybe she will not speak because she does not need to, maybe she will. No one knows, all the doctors say they know, but they do not. They do know that 90% of Trisomy 18 positive children do not live past age one. They want Emma to have every chance to beat those odds, if it is God's will for her to do so. That is why they think God chose them for Emma.
Emma went to heaven on December 15. The cardiac surgeons were unable to do anything to help Emma's heart. Bess and Matt know they would of tried, if there was something they could try. Emma's particular anatomy was just not able to be fixed. She went peacefully in her Mom's arms, with her Dad by her side. Matt and Bess kissed her and spoke softly to her as she left. When the moment came, Bess felt Emma leave, her Grace went through Bess from head to toe, like a tingle, or a breath, very soft and yet very strong. Emma Grace brought so much love to so many people and she touched so many peoples lives. Her life was so short, but so full. She is forever in all our hearts and souls and is now a beautiful angel in heaven. She was worth every minute and for that they are grateful. She has forever changed their lives for the better. Emma Grace's family misses her terribly. Her brothers Ben, Jake, Zack and her sister Chloe all love her and know she is happy and loved in heaven.
What Is Trisomy 18?
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