For those unfamiliar with Lily's story, she started life as a twin. Her twin (whom we named Casey) passed away at 10 weeks gestation, and Lily held on to continue the fight. At 16 weeks (on July 6), we found out she had Spina Bifida, a neural tube defect, which had prevented her spine from closing completely and left a hole in her back. Spina Bifida is very treatable however. There are varying degrees of lower body disability, but the location of Lily's spinal lesion was excellent in terms of her prognosis. We felt very optimistic that Lily would lead an active and normal life, though she would require some surgery and rehabilitation.

Given the Spina Bifida diagnosis, however, our doctor recommended that we have an amnio to rule out any other potential problems. We agreed it would be a good idea, and went ahead with it. However, we never expected to get the news we got on July 19. The words rang hollow in our ears: "Your baby is a girl. She has Trisomy 18. It is fatal."

Then the technical stuff started, followed by statistics. Trisomy 18 is a chromosomal abnormality, where when the egg and sperm join and then split, the baby got three #18 chromosomes instead of the usual two. For some unknown reason, this has tragic outcomes. If she survives birth (a big if) she will likely die shortly thereafter. Fewer than 10% make it to their first birthday. Of the 90%+ who pass away, most do so within the first hours, days or weeks. Over 90% of T-18 babies have heart defects. They have kidney problems. They have feeding issues and breathing issues. They don't grow and thrive. They are severely mentally challenged.

The diagnosis caught us completely off guard. The first thing we did was name her Lily, a name we’d picked out based on a dream Mommy had a year and a half earlier. Our second decision was to continue the pregnancy; we didn’t feel that it was our choice to make when Lily would die. It was hers and God’s.

We spent the next four months grieving, praying and trying to come to terms with our unborn daughter's imminent death. It was impossible to reconcile, emotionally and mentally, that this feisty little girl would ever stop kicking. She charmed us entirely with her will, with her kicks and contortions and with the hand signals she made in ultrasounds. (She made an "L" during one ultrasound with her thumb and forefinger, and a peace sign another time.) She had hundreds if not thousands of people praying for her in the U.S. and around the world. Her big brother Daniel wrote and recorded a song for her, which I played for her via headphones on my belly.

She had weekly tests via ultrasound to see how she was doing. She passed every single one with flying colors. But her doctor was afraid that because of her size and her condition, she may die suddenly in utero. We had decided early on that our guiding objective was to see her born alive and to have her see the parents who loved her so much. So we scheduled her delivery for 37 weeks: Monday November 28, via c-section.

The day came and we were prepared to celebrate. Her grandparents Jim and Charlene, John and Genie, brothers Daniel and Andy, and her Aunt MaryAnne were at the hospital. We had a photographer come too. (Amy, our talented photographer, was another gift from God, which I’ll tell about in another post.) We brought sparkling cider to toast our Lily’s birth. Our dear minister friend Rachel was there to help usher Lily in, as well as assist in her baptism. Jill James, the hospital chaplain was another source of great support and information for us.

Lily’s birth went smoothly. She was born at 12:23 p.m., weighed 3 lbs 11 ozs, was 17" long and had dark hair. With the exception of her hair color, she looked just like her Daddy. When Lily was born, she cried, and so did her mommy and daddy. She was assessed and evaluated and given oxygen to help her breathe. The next day, she had surgery to close the very large hole in her back caused by the Spina Bifida. To have an opening that large was to risk infection, i.e. meningitis. Without the surgery, it would be impossible to hold her. For the surgery, she was put on a ventilator, which was left on. That same day, she was given a heart exam, which revealed that her heart defects were more numerous and complicated than previously known. Normally, a day or so after a baby is born, a duct will close between two chambers of the heart. Usually, this is a good thing. In Lily’s case, when this happened, it would mean her death unless there was open heart surgery, which she was not a good candidate for, for a number of reasons. She also had occasional apnea episodes, where basically, she would forget to breathe. Lily was textbook Trisomy 18…heart defects, apnea and a host of other problems. She was also undeniably strong. Somewhere along the line, she earned the nickname Tiger Lily. But as strong as she was, she was incredibly sweet. Tuesday night, her mommy and daddy got to hold her for the first time. She was still hooked up to the ventilator and various other equipment, but it didn’t matter. We held her and cuddled her and read her stories and kissed her. Also on Tuesday, Lily had an eye exam. Her daddy and I were delighted to know that her eyes were perfect. We had gotten what we wanted…to see her born alive, and to know that she could see the parents who loved her so much.

By Wednesday, two days after her birth, her heart duct was still not closing, but it was imminent. That night, her mommy went down to the NICU and with the help of her nurse, Frosty, I got to hold her for about an hour. It was heaven. I was so sore and tired from my own surgery, and whenever I got a chance to hold Lily, she had a remarkably calming effect on me. I was able to go back to my room that night and get some sleep.

On Thursday, we were facing another difficult decision. The clock was ticking on her heart duct closure. Lily was still on a ventilator to help with her breathing. Her vital signs were starting to slow down. We could take her off the ventilator and hope that she would breathe on her own, of course realizing that an apnea episode may end her life. Or we could keep her on the ventilator and watch her die from her organ failure after her heart duct closed. We prayed and cried and prayed some more. We decided that the most loving thing to do was to remove the ventilator. If she died from apnea, it would be much more peaceful, for her and for us, than if her organs failed more slowly because of the heart condition. We decided to leave the ventilator on until her brothers and grandparents had had a chance to hold her. After that, her daddy and I wanted to spend time alone with her. By this time, we’d been moved into a special room in the NICU. We slept with her on our chests all night Thursday. It was the best night’s sleep yet. Sometimes when I woke up during the night, I would look at her and her eyes would be open, looking at me. She was so content when she laid on us. And so were we.

Friday morning, we arranged to have a chaplain and our minister visit with us and help guide us through this difficult day. We spent more time alone with Lily. Her grandparents saw her for the last time. We called Amy the photographer back. We held Lily and set our room up so that we could spend the rest of our time with her comfortably.

At 3:30, we removed the ventilator and chest tube. We kept the monitors on, but silenced the alarms. We wanted to choose to look at the screen to see what was happening, but we didn’t want to hear it. We kept the IV going, in case Lily stuck with us for a long time, she would have plenty of fluids. Nurse Stephanie took Lily out of her isolette and brought her to us to hold and cuddle on our bare skin.

Amy came in and did her beautiful work. We were blessed to have her document these incredible moments with our daughter. After she left, we just held Lily and talked to her and read Cinderella to her. We made up silly songs for her and we played Daniel’s song too. We watched the monitor closely and gave her oxygen as needed. Her nurse Stephanie came in frequently to check on her. Lily was very content…her heart rate went up for the first time all day, her breathing was good…all her vital signs were very good.

A few minutes before 7:00 pm, Lily had an apnea episode. Her heart rate slowed, became erratic. We rubbed her, gave her oxygen, and begged her to stay with us. She tried and tried, but just couldn’t do it. She became weak and lost her color. She turned blue and ashen and became completely limp. She was in her mommy’s arms. It seemed to take forever, but her heart finally just gave out. Her daddy cried and mommy was hysterical. It just was too soon. Nurse Stephanie was there to comfort us. Lily made a few occasional last gasps (called agonal breaths), presumably to rid herself of the extra oxygen in her lungs. These gasps were painful to watch.

Stephanie eventually took Lily from us and we hugged and cried. She called in another nurse (Katie) to verify that Lily had no heartbeat and to pronounce her dead. After that, they left us alone for a few minutes. When Stephanie came back, we asked if she would remove the remainder of the monitors so we could just hold Lily unencumbered. She did. She then commented that even though 20 minutes had already passed, Lily was still having agonal breaths and that seemed unusual. She asked Nurse Katie to come back. Daddy and I were still seated in the cot, and couldn’t see what was going on. Katie came back in. She checked Lily and turned to us and said “Well, this is very unusual. In fact, we’ve never seen this before. But she’s got a faint heartbeat and she’s trying to open her eyes. She could linger for hours this way.”

Well, by all means, let her!!

They lifted Lily out of the isolette and she was pink and crying! She wasn’t lingering, she was fully present! She had her eyes wide open…she was more alert than we had ever seen her. Daddy and I were giggling and euphoric. We’d gotten another chance! Lily looked at us both and then she looked toward heaven. We were sure she’d already been there, but that she came back to give us this amazing gift. We played with her, and talked to her and just kissed her and loved her completely. We had no monitors this time, no oxygen. We were completely focused on her. We gave her water. The method of giving water to a baby like Lily is to dip a little sponge on a stick into sterile water. The sponge is put on her lips and the water goes in. Okay, you Christians will realize where I’m going with this…exactly what was done for Jesus on the cross! (Who, rumor has it, also resurrected!) Anyway, she had fun with the water on her tongue. She made a funny face when I kissed her on the mouth. She made us laugh. She was just so sweet, so beautiful to behold and so adorably quirky. We thanked her so much for giving us this gift and told her that when she needed to go, she could and we’d be okay. Who could have asked for more than what she’d already done? I cannot imagine a more loving and courageous act than to come back into her tortured little body just because Mommy and Daddy were so sad. It was so clear from that that she understood how much we loved her, and she loved us just as much.

We got nearly another hour with our beautiful, strong and brave Lily. She then very comfortably slowed her breathing and died very peacefully. We also felt her peace that time. No more agonal breaths. No more crying from us. We continued to love and hold and kiss her, but we knew she was gone this time without a doubt.

The nurses, however, waited at least a half hour to call her time of death! Didn’t want to make a mistake this time!

We stayed with Lily that night and kept her little body very warm. We bathed her and changed her diaper. We slept with her and kissed and cuddled her and talked to her. It may sound morbid, but it was a beautiful experience for us. Her grandparents and one of her brothers came to say goodbye to her. We slept with her between us, all wrapped up in her electric blanket to stay warm. The next day, we took her for a little walk in the children’s garden at the hospital. Then Daddy’s best friends came and made an incredible plaster casting of Lily from the torso up. It captured all of her features and we are unbelievably happy to have it. We also did casts of her hands and feet. She has typical hands and feet of a Trisomy 18 baby, again, adorably quirky if you ask us.

It was an amazing experience. We miss our Lily girl so much, but we know that anyone who will come back into their body just to be with us, can never be too far away. She is with us. This is not just a trite saying…this is the truth. She blessed us since before we ever knew about her, and she continues to bless us. And we know that she can’t do this all by herself…we sincerely believe that her twin Casey has a hand in all of this too. Lily was memorialized in a service on Thursday, December 8, 2005 at 12:30. She was buried in a pure white, hand-smocked gown, with a sweater, hat and socks that mommy knitted for her. She was wrapped in a beautiful pink blanket that mommy made as well.

Lily Kathleen Bryan is our little angel…she has touched so many lives. She has brought people together. She has made our family closer. She has helped her daddy and mommy fall more in love with each other, and appreciate her brothers that much more. She has inspired countless people to pray, to hug their children, to reach out to one another in kindness, love and compassion. She has accomplished more in her short life than most people can ever lay claim to. And all because she was strong, brave and full of light and love. We will miss seeing her everyday, and already do. But we are so proud of her. And we feel blessed to have had a part in escorting such a beautiful soul into the world. It is a privilege to call ourselves her parents.

     

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