Lily (April 15th, 2005 – June 10th, 2005) with Mom and Dad

Lily Gianna Josephine

Little Lily was a pure joy to my family from the first moment that we knew she was in existence, quietly growing under my heart. I'll never forget sitting around the dinner table with my husband, Aryae, and our four other children, ages 3 to 10 years. We asked them to guess what our special surprise was. The guesses ranged from “we're moving” to “we're getting a new dog” to the ridiculous. Finally Therese, in her little 5-year old voice said, “Is it a baby?” In the noise, she wasn't heard. I said, “What did Therese say, guys?” Therese's eyes nearly popped. “Is it a baby?” “Is it, Mom, is it?” Then followed pure pandemonium, with whooping and incredulous eyes. Several children stared at my tummy. To this day, I can't think of a gift we've given our children to elicit more excitement than a new baby.

Never has a pregnancy given me more joy, more fatigue, or more worry than when I was expecting Lily. At 18 weeks, I had a Level II ultrasound at Fairview Riverside Hospital which revealed four “soft markers” for Down syndrome. The doctors and nurses couldn't have been more gloomy and “sorry” although the results of this test are far from conclusive. They recommended an immediate amniocentesis which I refused due to the risks involved for our baby. Two weeks later I had another ultrasound, hoping that the new findings would relieve some of my fears for our baby. During this ultrasound, the doctor found what he believed to be severe heart defects. I was sent for an immediate echocardiogram at the University hospital. Terribly frightened, I was told by a very clinical doctor that our child had “Epstein's Anomaly” a heart condition where the tricuspid valve is displaced and can cause the right atrium to balloon out. I was told to go home and call my doctor if our baby stopped moving. I was told this was one of the few conditions where a baby will die in the womb.

The darkness and fear I experienced in these days were unlike any other fear. The doctors could not have been more discouraging. It was only when my sister, a doctor herself, recommended that I get a second opinion that things began to change. We were referred to the Children's Heart Clinic at Children's Hospital in Minneapolis . From the moment my husband and I walked into Dr. Singh's office, the clouds lifted. Here, instead of pushing dangerous tests and informing us of the option of abortion, we felt our child's life was valued and that Dr. Singh would do everything he could for our baby. His office and staff were cheerful, and when they performed an ultrasound, the nurses kept telling me how cute she was, and they laughed when Lily insisted upon keeping her gender a secret. I remember later telling my husband that if we were to lose this child, I wanted to lose her while Dr. Singh was caring for us.

For the next ten weeks, we enjoyed the care of Dr. Singh and the perinatologists at Abbott Northwestern. In mid-April, however, things took a drastic turn. Suddenly I felt Lily moving less. Upon examination, I had lost most of my amniotic fluid. I was admitted to the hospital April 13, and Lily was delivered by C-section on April 15. She was only 281/2 weeks gestation and very ill. Over the next few days, we had little hope. Then, little by little, she began improving. She began taking my breast mild in tiny doses, but it caused her to grow! She went from a birth weight of 2 lb. 11 oz. to over 4 lb. at one point.

Lily's entire life, after her happy months in my womb, was spent in the NICU at Children's. Our life revolved around visiting her. The children came frequently and would sing lullabies to her. They learned to disinfect their hands and then gently lay their hand on her tummy or back. We were entirely cared for by the wonderful nurses at the NICU and by our families and the parishioners at our church.

In June, we made the difficult decision to allow open heart surgery after Lily began failing. At first she did well, but on the morning of June 10, we received the call that we had dreaded, “Mrs. Brown, I'm so sorry, but Lily isn't doing very well.” Aryae and I were able to spend the last 5 hours of her life with Lily as she slowly slipped away. Dr. Singh was there with us, with his usual kind and honest approach. He had always assured us that if the time came when they were doing more to Lily and less for her, that he would let us know. When he told us this that morning, we accepted that there was no more we could do for our daughter except be with her as she died.

There are so many things I have learned in the nearly six months since we lost this precious daughter, but the main thing I like to tell people who feel so sad for us is that I would go through everything again in a heartbeat! I count Lily's life and the days we had with her as pure gift. We never deserved her. She is our daughter forever. She is my children's sister forever. She lived her life as she was meant to – and it was a life of suffering – and we know she did precisely what God wanted her to in those days. I thank God for our dear little Lily, and I can't wait for the day when I can hold her again.

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.