Dear Therese,
I am so grateful you responded to my email. Thank you so much. I live in Maine actually. We did not know of her disorder. I had an ultrasound when I was about 22 weeks. It was then they saw a scar on her heart, but told me they had seen it in many ultrasounds and not to worry that it would be fixable. I know that was just their way of dealing with it, but at the time, they were just trying to be optimistic, as I was. I also tested positive with AFP for Downe's Syndrome. I was very worried, but stuffed it down deep inside. (I do have other children...3 to be exact. They are all teenagers...13, 15, 16).

I was offered an amniocentesis, but chose not to go there since I also tested positive (AFP) with my dear, sweet Rebekah. She is 13 now and very normal. All of my children are healthy and fine. After Rebekah's birth, my OB told me I should consider not having more children due to the fact that I had varicose veins in the vulva and externally on my legs (so what!). I so foolishly made an appointment to get a tubal ligation. I have lived with the after affects of that decision for many years. I kept thinking that God would allow me to conceive even though I had shut off the passage of life. I also had many side effects from the operation. I had severe periods, headaches, irritability beyond measure, anger fits (sometimes very scary). I was always longing for another child. After 13 years, (last year actually), my husband and I decided to try for a tubal reversal so I got online and found a place in North Carolina called Chapel Hill. Dr. Berger had been doing this procedure for years and it was successful. It was $5500 dollars and not covered by insurance, but up here in Maine, they would charge us $12,000, so we thought it to be fair. The problem was we didn't have that kind of money. I made plane reservations anyway and we went down to check it out. We realized the financial strain it would put on us, and decided to wait a little longer to see if we could come up with the money.

Months went by and I was losing hope. I went to my annual OB visit with my doctor in December and he asked me if I was still interested in having a reversal. I was ecstatic that he would even ask. I was so wanting to, but told him we were financially stuck. He told me he knew the financial director well, and he would try to negotiate with him for us. The dear man called me himself and we spoke at length. Finally after much talking back and forth, the hospital decided to allow me to have the surgery for $5500. It was a true miracle. That was last April. I conceived in May. It was a glorious day and I was never so happy! I felt like a complete woman again!

Little Maria was born at 36 1/2 weeks (last Monday morning at 2:28 am) with a very short delivery. I made it at the hospital at 2am. The doctor arrived at 2:20 and told me to push (actually I told him I had to push). It took three pushes. Out she came at 4lbs 14 oz. How beautiful she was! She and all of my family were so happy! That morning my dear husband and I slept in my little hospital bed for a few hours. It was so nice. On Tuesday, Maria's pediatrician came in with some major concerns after examining her. She had all of the sure signs of Trisomy 13... extra digits on both hands and feet, her ankles were prone, she had a cleft palette which you couldn't see because it was in the back of her mouth, she had a loud heart murmur, an enlarged nose, and several other things we found out later on that you couldn't tell by looking at her.

A team of doctors came to get her and transported her and me (separately I might add, which bothered me) to Portland Maine Medical NICU, where many doctors evaluated her. We were given the punch in the heart (that's what it felt like) and my husband Lou and I just sat and cried for a long time. We immediately called for the hospital priest and he baptized her. We held her for a long time. My friend Joann came to be with us and the second night there she held her all night long while we went home, reluctantly, to get some sleep (that was a joke). Joann called the next day (Wednesday at 9:00am) and said my little peanut was fine. We got the kids off to school and headed down there in a severe snow storm (go figure). Several people came in during the day to visit and hold my angel.

At around 3pm, Maria was beginning to slip away, and Lou and I held her in our arms. Her breathing became shallow, and then a real sense of peace came over her face. I kept looking at the screen that showed her vital signs. I watched as they slowly went down, down, down. Oh how hard it was and has been. After she died, I asked the nurses to please take the wires off her and let me hold her. I rocked her little body in my arms for a long long time. I kissed her beautiful strawberry blonde head, and just loved her. Oh how I cried and grieved. I am reliving this now just writing this to you. I am pretty worked up. It is good for me to do this even though it is sooooo hard!

Maria Therese has touched so many lives. The medical staff cried many tears with us. They were so good. They let us do what we needed to do to finalize her death. I made a goal that the doctor would take her out of my arms at a certain time and do what he needed to do. He was very hesitant, but I knew this was what needed to be done. We stayed awhile longer and then left. Oh Therese, I have been in mourning ever since. Yesterday was better. The planning of funerals and the bombardment of cards, emails, gifts, food, people...is sooooo overwhelming for me! I am grateful for them, it is just difficult.

My little Maria is with Jesus, and that is a comfort. I could not have given her that. She is better off than me. She can help us now. I am so glad. I miss her, oh how I miss her! Tomorrow is her funeral at 11am. Please keep us in your prayers. I appreciate your response. I am so glad to have found you, Therese.

I have attached our letters my husband wrote to our friends and family. I also have attached three pictures to share with you so you can have a better idea of my baby and me.

May God bless you and I will be in touch. I am going to join the online website you gave me. I am so grateful!

One last note. I just want you to know that I am open to God's will in my life to have another baby. I am not rebounding, just open. We also are licensed foster and adoptive parents for DHS here in Maine. We are open to adopting more children.

I could not allow my breastmilk to dry up, so I am donating my milk to a local hospital for moms who cannot breastfeed.

Peace my dear sister,
Pamela Sullivan
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