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Brianna's Letter

The following is a copy of the letter Brianna's family distributed at her funeral.


Brianna Shannon T---, November 25, 2000

A Celebration of her Life, December 2, 2000


Dear Family and Friends :

Thank you so much for coming here today to help us celebrate the life of our daughter and sister, Brianna Shannon T-. While our hearts are broken at giving her up, we feel blessed to have had her in our lives. She has changed us forever, and we want to share with you both our sorrow and our joy.

We wanted also to tell you a bit about Brianna's story and the journey that has brought us to this day. We have known since late June that Brianna was not destined to be with us for very long. We found out at her 16 week ultrasound that there was a strong possibility that she had a fatal birth defect known as bilateral renal agenesis: no kidneys. This birth defect is also known as Potters Syndrome, and is very rare, as it occurs in only 1 in 4000 births. Usually, when it occurs, it is the result of a "fluke": something that went wrong during conception and early cell division. Most of the time, when this happens, it does not happen again to the same parents. We have since found out that, for us, Brianna's Potters Syndrome is actually the result of an inherited genetic disorder. This disorder, called Branchial Oto Renal Syndrome (B.O.R. Syndrome) can cause branchial, hearing and kidney disorders that range from very mild to the most severe, as in Brianna's case. B.O.R. Syndrome is so rare that it is found in only 1 in 40,000 people. Potter's Syndrome only occurs in 3.6% of those people born with B.O.R.

We had follow-up ultrasounds done at 18 and 19 weeks, and these confirmed that Brianna really did not have kidneys. This meant that she could not live beyond birth. When there is no kidney tissue at all, it is not possible to do dialysis or a kidney transplant. And, without kidneys, the amniotic fluid around the baby is very, very low. This prevents the baby's lungs from fully developing, too. In fact, this is what would ultimately lead to Brianna's death. The amniotic fluid, made up primarily of the baby's urine, is needed to not only cushion and protect the baby, but also to ensure that the lungs can process oxygen sufficiently to sustain life. Brianna would die not from kidney failure, but rather from a lack of oxygen. We were told that her passing would be peaceful and painless.

Even though we knew that Brianna would live for a very short time, anywhere from minutes to maybe hours, for us the right choice was to carry her to term. As her parents, we wanted to give her everything that we could. We also knew, from what the doctors told us, that there was a 40% chance that she would die even before birth, from cord compression. We decided to just put it all in God's and Brianna's hands, and just let whatever happened, happen.

We have spent these last 5 months enjoying what we could of Brianna's time with us: her kicks, her punches, her hiccups, and just knowing that she was with us. We have also been grieving and preparing to let her go. And, along the way, we have learned a lot about love, strength, and friendship.

Brianna was born by c-section at 6:50 a.m. on Saturday, November 25, 2000. We had planned an induction for 3 days later, but Brianna took matters into her own hands Friday night, demanding that it was time for her to come! She weighed 3 lbs 3 ounces and was 15.5 inches long. She stayed with us a full hour. This was in itself a miracle, the "little miracle" that we had hoped and prayed for all along. Brianna breathed on her own, she cried and she moved her hands. Her full head of dark brown hair was just as we had both had imagined it. She spent that hour in our arms, and very peacefully slipped away, while alone with her mommy and her daddy.

While we are grieving her loss, we are also relieved and at peace. We have done so much to prepare ourselves for this, and have experienced so much love and support throughout this part of our journey. We know that this is a never-ending journey. Brianna is a part of our lives forever, and we will always miss her. We know that we will need your continued love and support for many days and years to come. The times that you have spent talking, crying and just being with us have helped sustain us and we know that we will really need more of those times from you as the weeks and months go by.

Today is a celebration of Brianna's life and of the love and friendship that have brought us all together. Thank you for sharing this with us. We love you all so very much.

C, K, and M

Many of you have asked about memorial donations. Research doctors at Boystown National Research Hospital in Omaha, Nebraska are conducting a study of B.O.R. Syndrome. This study is working with families with this syndrome to better identify, understand and hopefully lead to prevention of this genetic disorder. Memorial contributions to assist in advancing this study can be made to the following fund, which will be forwarded to the Hospital. Alternatively, donations can be sent directly to the hospital, marked as intended for the study of B.O.R. Syndrome. Either way, your gift will be acknowledged by the hospital for tax purposes.

Brianna Shannon Memorial Fund
c/o Glastonbury Bank & Trust
2461 Main Street
Glastonbury, CT 06033
Attn: Mr. Dennis Weir
Boys Town National Research Hospital
555 North 30th Street
Omaha, NB 68131
Attn: Ms. Toba Cohen