Newmarket, New Hampshire (NH) - Full T13

"Through all this grief, I do not for one instant regret having Jill. I do not regret HER. She is worth all of this pain, all of this sorrow. She is everything to me. We will never be the same. Everything is changed now. Everything is different. We have a beautiful baby girl named Jillian now. She has changed everything. Just as if she were still alive, she has changed everything in her death. Because she was. Because she is. Because she’s ours. We had eighteen of the best days of our lives. Eighteen days and all of our hearts full of love for Jill. Forever Jill." ~ Ruth - Jill's Mom Springtime It's summer now. We jump and play. We're swimming in the pool. But Baby Girl won't know these things Because life can be so cruel. Autumn's here. We're having fun. It's calm and crisp and mild. People say, "I've lost someone too." But they've never lost a child. Autumn's here. We're taking walks Under the leafless boughs. People expect us to just live our lives. We can only wonder how. Autumn's here. It's Halloween. We go to trick-or-treat. We talk to people, But they don't know About our baby oh so sweet. Winter has come. We bundle up. The bugs have gone to sleep. There's baby socks and hats and Other things That we shall always keep. Winter has come. It's Christmas time. We're sledding down the hill We get all sorts of presents, But what we really want is Jill. Winter has come And it's been almost a year Since she has gone away We might have memories without her, But in our hearts She will always stay. ~Gregory Hadley (Age 15) Jillian's brother - - - Reflections from a Mother’s Heart Broken hearts Shattered lives Overwhelming grief Empty arms Empty dreams Time passes Pain lessens Sorrow lingers Life changes Thoughts transcend days and time. And yet, she is a gift. I had her for a little while. I kissed her little cheeks. I held her in my arms. And loved her with all my heart. Love endures ~Ruth (Jill's Mom)

Mom:  Ruth Hadley Newmarket60@yahoo.com

My name is Ruth Hadley, and my husband’s name is Dana.  We have seven children.  Eric will be 18 in July; Greg is 16; Jeff is 13; Alexandra is 10; our twins, David and Ben, are 7; and Jillian, our precious little love, died when she was just 18 days old.  She was the 7th child of the 7th child of the 7th child, and she had Trisomy 13.

Never in a million years did I ever think there would ever be anything wrong with my baby.  I prayed every day for my baby to be healthy in mind, body and soul and had complete trust that Jill would be absolutely fine.  Discovering that Jill had Trisomy 13 was and is the most devastating and heartbreaking tragedy imaginable.  I don’t think I will ever heal from this complete and total agony of losing my beautiful daughter, my Jill.  It is still like a nightmare to me.  I don’t want to believe that there was anything wrong with my little baby girl and that she had to die because of it.  It all seems so unfair to me.

Images flash before my mind–my baby girl lying in an isolette in the NICU as I walk up to her.   First I see her little feet, then her precious little legs, sweet little tummy with wires across it, and the dark hair on her head, and then my daughter’s beautiful face, as I reach her side to touch her and ask if I can hold her...Holding her against my chest all night long and in the morning the neonatologist walking in the room, telling me my precious baby girl would die...Holding Jill in my arms when she was born...Falling deeper and deeper in love with my little Jill each time I saw her, each time I held her.  How I love her, my little baby girl...Jill lying under the billirubin lights wearing her sunglasses, wishing I could hold her, my heart breaking for her, with love for her--my precious, sweet, innocent, little Jill.  I love you.

Jill was born 16 weeks and three days ago, on February 9th, 2006, her due date.  I remember that day so vividly.  I had been to the midwife two days prior, on the 7th, but she was concerned about my blood pressure so I had to come back in for more tests.  My body had begun to swell up with fluids about three weeks prior.  She took a non-stress test of the baby’s heartbeat and she was fine; I wasn’t worried at all.  Of course she’s fine.  I figured I was okay and Jill was fine, of course.  Of course.  She suggested I go to the hospital and meet with the obstetrician.  I agreed, but when I got there I was admitted, sent to L & D, given a hospital gown and met my nurse.  I was a little confused  and didn’t understand why I wasn’t just meeting with the doctor in his office or something.  I called my husband and told him about what was going on and asked him to come to the hospital to be with me.  Something was wrong; I could sense it.

Finally the doctor came and told me I had to have the baby that day, to either be induced or have a C-Section, because of my PIH and possible kidney failure.  They didn’t really explain all that much to me, just that I had to have the baby that day.  I chose to be induced.  My other children were natural childbirths except for my twins.  I had a C-Section for them at 28 weeks, so this delivery was a VBAC.  I wasn’t concerned about that either.  The doctor broke my water and the midwife started the pitocin.  I had never been induced before and I could not deal with the continuous wave of contractions without let-up because of that nasty pitocin.  I asked for meds, which was so unusual for me, but this labor was so intense.  I regretted it as soon as it took effect because if made be feel so disoriented and completely out of control.  I did not like that feeling at all. 

When Jill was born, I held her and loved her and never for one minute thought there was anything wrong.  We expected to take her home the next day.  Then the nurse took her from me and walked over to the other side of the room to bathe her.   I thought that was strange, even in my disoriented state.  The nurse said, “Oh, she’s tongue-tied.  Oh, she’s got an extra digit on her foot.”  Then I said it looked like the baby was turning blue, and the nurse left with the baby to give her some oxygen.  I thought that was strange, to leave with the baby like that.  Jill was born at 9:52 pm, so by 11 pm, Dana went home to be with the kids and said he’d be back in the morning to take us all home.

Before I knew it I was on the maternity ward, still loopy from the meds, and the pediatrician came in with the nurse and said that Jill needed to go up to the NICU because she needed more oxygen  and care than the maternity nurses could give her.  They brought me into the nursery.  I walked past the healthy babies over to a corner where my little Jill was lying all by herself with a nurse giving her oxygen.  I followed them up to the NICU and stayed there watching them switch Jill to the NICU nurses.  I was told that I had to wait until morning for the neonatologist to come in.  I was still so disoriented, I don’t even remember leaving Jill, but I ended up back in my room on the maternity ward far away from her.

That morning the neonatologist came in and said that my Jill had a number of symptoms that, in and of themselves, wouldn’t mean anything, but together they seemed to form a type of syndrome.  I couldn’t believe my ears.  I couldn’t figure out what he was talking about.  What did he mean?  It  was like a nightmare; it wasn’t really happening.  I couldn’t believe there was anything wrong with my baby girl.  The Doctor said that she had low blood sugar and was on IV fluids, that she had a prominent nose with a broad nasal bridge, she had very small eyes, her ears were quite small looking with crinkling on the outer curve of her hear, she clenched her fists, she had large great toes (hammer toes) and a skin tag which was a rudimentary sixth digit that didn’t form completely.  Jill’s blood oxygen levels fluctuated, and she had streaky lungs. 

All of these things led them to suspect that she had a suspicion of a syndrome which, he explained to me, is a group of features that cluster together.  He thought it might be Trisomy 13, but would send a blood test to the Mayo clinic to be sure.  I was in complete shock.  The tears poured like buckets and my body racked with pain for days.  How could this be?  How could this possibly be?  I kept trying to think if I had done anything during this pregnancy that would have caused this terrible thing that happened to my daughter.  I blamed myself for everything.  To this day I still catch myself thinking, “Maybe if I hadn’t eaten this or went there or done that” on a regular basis.  The cardiologist diagnosed Jill with Patent Ductus Arteriosus (PDA), Bicuspid Aortic Valve, Anomalous Coronary arteries, and Patent Foramen Ovale (PFO).  He said that there wasn’t any surgery he could do for Jill at that time because of her age.

I called Dana at home around 6 am when I figured he was awake and told him there was something wrong with Jill.  That was before the neonatologist had come to talk to me.  Dana couldn’t believe what he was hearing either.  I called him back later on to tell him what the doctors were explaining to me.  He said he would tell our other children and would bring them to the hospital to visit.  I immediately went to see Jill and held her as much as I could.  My Doctor told me that my blood pressure was still too high (150/90) and that I could only visit her (in a wheelchair) for an hour at a time and then had to rest.  I didn’t want to hear that at all.  I just wanted to be with my little Jill.  It was so hard to be away from her for one minute, but I could only visit her every other hour.  My other children could only visit two at a time with either Dana or me.  It’s a good thing the NICU had a nice visitor’s waiting room, and my children took total advantage of the food, computer games, and TV.  Thank God they had that distraction since they had to take turns to visit with Jill. 

That evening a priest came and I yelled at him and told him my prayers didn’t help at all and what good are they anyway.  He just let me yell and cry and cry.  Then I asked him to visit Jill with me and to baptize her.  He wheeled me up to the NICU and baptized Jill.  I don’t think he understood the gravity of her condition, but I am so very grateful that Jill was baptized.

On Sunday, the third day of Jill’s life, I was holding Jill on my chest against my heart when the doctor came in and told me that they were 99% sure that Jill had Trisomy 13.  The results from Mayo clinic were due the next day.  Then she said that most babies die within the first three months of life.  There was a major snowstorm that day and Dana wouldn’t be able to make it to the hospital, so again I called to tell him the most devastating news of our lives.  That our baby would die.  I was still grieving for the things  Jill would never be able to do, and then I was told that my precious baby was going to die.  I told the nurses that the doctors were wrong and that Jill would be just fine.  I was in complete denial.  I refused to think that Jill would die.

I was determined to prove to the doctors that Jill could nurse, and she did nurse–but not very well, so I ended up pumping my milk and feeding her with the preemie bottles the NICU supplied.  The doctors told me that there would come a time when Jill wouldn’t be capable of drinking from a bottle and that she would eventually need a G-tube.  It’s amazing how much I was able to accept, a little at a time.  I would do anything for her.  Anything to keep her.  Anything to protect her and give her all of my love.

When Jill was one week old the Dr. told me that we could take Jill home.  I was very surprised, but he said that he did all that he could for her and what difference would a couple of weeks make.  I think I blocked that statement out of my mind.  We were so happy to have her home with us.  We all loved her so much and everyone held her and snuggled with her all the time.  I was aware that most babies died within three months, but I held fast to that three month mark thinking we had at least three months with our  Jill.  The local pediatrician had scheduled an appointment with her the following Monday.  He told us then that he didn’t know much about Trisomy 13, but that he would do all he could to help Jill.  He wanted Jill to meet with another cardiologist that came highly recommended, but she was on vacation that week. 

On Friday, the 24th of February, Jill started slowing down with her feedings.  Where before she would drink a bottle every two hours, on Friday she might drink a couple of ounces but that was it until the next feeding.  I remember saying that maybe she just wasn’t hungry.  How stupid of me!  What baby isn’t hungry when all she’s taking is breast milk?  I tried to stick to a regular pumping, feeding schedule, but sometimes Jill just wasn’t interested.

By Sunday, the 26th, our Jill drank a little bit of milk in the morning and then nothing until 4:30 in the afternoon.  Late that night as I tried to give her a bottle, she would shake her head as if to say she just wasn’t interested.  She seemed to be getting fussier and I gave her crushed chamomille and  a pacifier, and it seemed to soothe her.  That night she seemed more uncomfortable than before, so I knelt down with Jill in my arms and begged God to not let her suffer any more.  Jilll’s head began to get cold and clammy, and her nose was so cold.  I wrapped her up in blankets and held her tight.  The next morning I called Hospice and they planned on meeting us that afternoon.   At 10 am, my son Greg was holding Jill when he said, “Mom, she stopped breathing.”  I said, “What?”  Greg repeated what he said.  Dana grabbed Jill and started doing mouth-to-mouth CPR while I collapsed on the floor, screaming.  Then I called 911.  The ambulance and police came.  I told them that Jill was very sick and that I didn’t want her to die.

They brought her to the hospital and we all followed right behind them.  She was sprawled out on the ER table.  They tried to give her IV’s, but her body rejected them.  They put a tube down her throat to release the gas in her tummy from all the mouth-to-mouth.  We okayed an x-ray.  Then they wanted to drill a hole in her leg bone to give her antibiotics in case she had pneumonia.  We said no, just give her to us.  We took Jill, in my arms, up to a big L&D room.  We were all there together and then two nurses from hospice came.  One of them said that we’d better not try to drive home because our little Jill might die on the way there.  So we stayed where we were and took turns holding her and loving her and kissing her.  We gave her oxygen until the tank ran out, remembering that the pediatrician had reminded us that Jill would need carbon dioxide as well.  I begged her not to leave me.  One time she stopped breathing and I thought it was the end.  I screamed and cried out to her, “Don’t leave me Jill!  I love you Jill.  Please don’t go.”  Then she came back to us.  Her breathing was different then.  Slow and labored, but I don’t think she was in pain.  I hope she knew  we were all there with her and how very much we loved her.  Then a priest came at 3:45 pm and he lead us in prayer for our little Jill.  Jill took her last breath right after the priest finished the prayers.  She died in my arms at 4:02 pm.  I screamed again in total agony, and we all cried for her-- for the baby girl that brought us so much joy that we loved so desperately.  We all took turns holding her and kissing her.

We brought Jill  home, and I washed her hair with lavender shampoo.  Then I gave her a sponge bath and dressed her.  I wrapped her up in lots of blankets because it was so cold outside.   We all held her and took pictures.  Then we brought her to the funeral home.  That’s a whole other story.  Suffice to say that leaving my baby daughter there and walking away from her was the hardest thing I’ve ever had to do.  We changed funeral homes and visited Jill the next day.  We all had a chance to hold her again.  The next day I dressed Jill in a beautiful baptismal gown and pretty socks and booties and brought a big white blanket with pink trim to wrap her up in because it was so very cold outside.  I dressed her and put lavender oil on her.  Then came the wake, funeral, and  burial.  We were living in a hazy fog most of the time from the shock of it all.  Thank God, because I would have died otherwise.

She died.  My baby died.  Oh, the heartache of it all.  The excruciating pain and agony and sorrow.  It hurts still.  My heart is broken.  My joy has been stolen from me.  My precious baby girl is dead.  Through all this grief, I do not for one instant regret having Jill.  I do not regret HER.  She is worth all of this pain, all of this sorrow.  She is everything to me.  We will never be the same.  Everything is changed now.  Everything is different.  We have a beautiful baby girl named Jillian now.  She has changed everything.  Just as if she were still alive, she has changed everything in her death.  Because she was.  Because she is.  Because she’s ours.  We had eighteen of the best days of our lives.  Eighteen days and all of our hearts full of love for Jill.  Forever Jill.