Mommy Sarah with Hope

My name is Sarah and I learned that I was pregnant the first week of January 2005. The aspects of being a single mother were exciting to me in that I had reached a point in my life where I had a successful job, owned my own home, and things were just in the right balance. My baby's father was not as excited and soon dropped out of the picture. This still did not deter me from wanting to be the best mother possible. The only thing missing from my pregnancy was my regular ob/gyn who retired the preceeding November. I began seeing a new practice and viewed this as a world of new beginnings.

Everything was progressing normally, however, I was referred to a specialist from the onset due to having had several biopsies of my cervix. My new ob/gyn wanted to ensure that my cervix would withstand a pregnancy and the specialist was to determine via ultrasound how things stood. I felt incredibly lucky to be able to have an ultrasound every week when most expectant mothers only get a few. At the 13 week ultrasound, I can remember how happy I was. My baby had passed the "bud" stage! There were arms and the longest legs you've ever seen and it was moving like crazy! I was so very proud! After the technician finished, the doctor came in to do the vaginal ultrasound to check my cervix. At no point was I given any indication that anything was wrong. Afterwards, she had me come into a conference room (which I had never done before). This is when she explained to me that my baby had acrania (meaning that the baby had complete brain tissue but lacked the complete formation of the skull. I later learned, through research, that acrania most often will lead to anencephaly due to the exposure of the brain to the amniotic fluid.) Devastated does not quite cover how I felt.

In a daze, I drove to my parents house and was fortunate enough to catch my father at home. I collapsed in his arms crying for my little one. Afterwards, I went straight home as my family rallied together for support. Mom, dad, and brother Jay came over immediately while my sister hit the road and traveled four hours to be with me. That first week was a blur as I remember making two more appointments with specialists to confirm the diagnosis. I also spent a lot of time on the computer trying like crazy to get as much information as I could about the birth defect that had just torn my world apart.

My new ob/gyn turned out to not be so great afterall. Immediately, they began to pressure me to induce because of what the pregnancy might do to my body, the quality of life for my unborn child, etc. After a few more visits, I was a nervous wreck and cried over the indifferent attitude shown towards me by my own doctors. I had not yet returned to work and feared that I'd be unable to. A co-worker and very good friend suggested that I see a counselor through a program offered by my employer. I figured it couldn't hurt anything and was surprised to be blessed with not only a counselor who specialized in infant/stillborn death but also a doula (which is a certified labor/delivery coach). I immediately bonded and began the process of being excited over my pregnancy again. Our sessions dealt with pregnancy more so than "grief" counseling and she was even able to find a supportive doctor in my area who welcomed me with open arms.

I could write a book about my new doctors, but needless to say they accomodated my every need in every way. They went out of their way to not only educate me but to educate themselves on my upcoming arrival. It was also at this time that I learned I was having a baby girl. (Somehow I just "knew" it all along.) Shortly thereafter, I began to think of names. Nothing I could come up with was "special" enough for this baby. One night, while watching a movie "Hope Floats" (Sandra Bullock, Harry Connick Jr), the phrase at the very end jumped out at me. It said "Beginnings are scary. Endings are sad. But it's the part in the middle that counts the most. Remember that the next time you find yourself at a beginning and just give Hope a chance to float up." It was at that moment that I named my baby girl "Hope". She WAS my middle part and I was going to enjoy her for every day of pregnancy that I could.

I continued on with my regular appointments and they stopped monitoring my cervix, so I did miss my weekly ultrasounds. But I still got to hear that "womp, womp, womp" of her heartbeat every time and it made my own heart swell with love. At 26 weeks, I was in the office for the second round of gestational diabetes testing (the four hour test). I had been what I'd describe as "uncomfortable" off and on all week. While in the office, I mentioned to my doctor that I had "pressure" in my abdomin. She ordered a urine test and told me I probably had a kidney infection (yeah, right). Not one to argue, I finished my test and went on home. All day, I noticed that the frequency of the pressure increased. I called every woman I knew that had had a baby, I posted on my support groups online, and I even called the nurse hotline for my insurance company. Everyone assured me that I was having Braxton Hicks contractions. Around 11:00 that night, I went to bed. The pressure was downright bothersome at this point and I could not get comfortable. Still not wanting to bother my doctor, I called the hospital around 12:30. Luckily, my doctor was there for another delivery so they were able to put me through to him. My doctor suggested I lay down for an hour or so and then come in if I wasn't feeling any better. Well, I was frustrated at this point, so I thanked him (as I was putting on my shoes) and I got in the car and headed on to the hospital. I thought "well, it might be nothing and I might be wasting a couple of hours, but I'm going to find out what this pressure is!". 

Once I arrived, the hospital staff was very nice and accomodating. They hooked me up to a monitor and confirmed that I was having contractions. This news sent the first wave of terror through me. I calmed myself as I was waiting for them to find my doctor by thinking "he can just give me something to stop the labor". Dr Howe enters and introduces himself (I had not yet met him at the practice). He does an exam and verifies that Hope is in the birth canal. I try to calmly explain to him that she's not due until September and that he's just going to have to stop it. He then tries to explain to me that he can't stop it and that she's coming tonight whether I'm ready or not. I was left alone to digest this news while they readied a room for me. It was at this point that I thought it might be a good idea to call my parents and let them know I was about to have their grandchild. I also thought that having my doula there might be a good idea considering that I had no idea what to even do. 

While waiting on my parents to arrive (and my doula to call back - of course I got her voicemail), I decided that if I was going to have a baby then I was going to request a c-section so that I could increase Hope's chances of survival. When my doctor re-entered, I disclosed my little plan to him thinking how proud I was of myself to have made such a decision. Once again, being a doctor with a great deal of education and experience, he began to explain to me that she was in the birth canal and it was no longer possible to even consider a c-section. This is when the tears finally came and wouldn't stop. I just wasn't supposed to have her so soon! My parents arrived and tried to offer me comfort but I was in too much pain (physically and emotionally) to see past the fact that the time had come and I was about to lose her before I really got to prepare.

Once in the room, everything went by so very quickly. I remember feeling like I had to use the restroom, so I just got out of bed and walked on in there. At that point, I had no shame and didn't even shut the door. That's when my doctor came back and caught me on the toilet. He admonished me for getting out of bed. I yelled right back at him that I had to go to the bathroom! He went on to tell me that too many babies have come that way and for me to get back into bed immediately before I had Hope in the toilet - that I did not have to go to the bathroom but that I was having a baby! Stubbornly, I got back into bed and told him that if I messed up those sheets that it wasn't going to be my fault. Once I had satisfied him by getting back in bed, he told me that Hope could come any minute or she could stay where she was for a couple of hours and that he'd be back in 30 minutes to check on me. No sooner had he gotten to the door when I felt a "bloop" and looked under the sheets and there she was! Staring up at me! I yelled for Dr Howe to get back over there and everyone immediately jumped into action. I remember him asking me to push, which I knew nothing about, so I made a face like I was accomplishing something and then there came the rest of her!

Oh, gosh, everything in the entire world stopped at that very moment. I could not take my eyes off of her! She was the most beautiful thing I had ever seen in my entire life and in that one moment all the love in my heart for everyone else was gone and was replaced with an enormous love for this little being that just popped out of me. I finally knew what other mothers were talking about when they say that you completely fall in love.

Sadly, Hope only lived fourteen precious minutes and I think the doctor was being kind when he gave me that much time. I never saw my darling girl take a breath, make a noise, or move. But I held onto her for over five hours afterwards before letting her go. Around 11:00 the next morning, I walked my daughter down to the pathology department (so they could get a tissue sample for the Duke Univeristy study) and I said "Goodbye for now". 

Hope Marie

I cannot describe the emptiness upon returning home. I missed my tummy and the movements I had grown accustomed to. I missed talking to her and rocking her. I missed everything about being pregnant because pregnancy guaranteed me that she was still with me. I became so very anxious to hurry to the funeral home so that I could see her again. And that's what I did the next day. The funeral home is another group of people that I could write a book about. They were so kind and let me do things that I'm sure they were not comfortable with. For example, I was adamant about dressing my daughter and they allowed me to do so and to spend as much time with her as I wanted. We also made tons or more pictures and did more mold kits of her hands/feet as well. The embalmer had already made prints of her hands/feet which I considered to be so thoughtful.

Before the funeral, I was allowed time with her again and this is when most of my family got to come in and hold her. I cannot describe the gut-wrenching emotion of having to place her in her tiny pink gingham casket. The funeral service itself was mostly a blur as I sat in the pew and clung to one of her blankets. Once at the cemetery, my father (who is a minister and presided over the funeral) finally lost it at the end which sent me over the edge as well. Throw in the extreme heat of the day and I was done. After nearly fainting, I was rushed home.

Six months later, I returned to work. The journey has not ended for me but the pain has lessened. I'm still so very active in the support groups I joined online during my pregnancy and have grown to consider the women I've met there "friends". If not for them, I would not have had the strength to even try to find my sanity again. The only pitfall to this is that we have new mothers joining from time to time. As much as I loved Hope, and as much as I would do it all over again, I wish no mother had to walk in my shoes and lose the one thing in this world they loved the most.

~ Sarah (mommy to Hope Marie)

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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.