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
