Hi. My name is Kathleen. I have a grown son (21) and a stepson (9) and a daughter who was born on November 28, 2005 and passed away four days later. Her name was Lily Kathleen.
My husband and I were quite surprised last April (two days after my son's 21st birthday) to find out the birth control had failed (or I had mistimed everything) and that we were expecting. At first, it seemed catastrophic (because of the timing--I was unemployed at the time) but we very quickly became excited about it. A few weeks later, we had our first ultrasound. My husband was holding my hand, and the Doc said "Well, there's the first baby and the first beating heart...and here's the second. Let me just make sure there are no more than two." We were floored...we were expecting twins! We told our sons the next weekend when we were all together. They were so excited. That weekend was also Mother's Day and my husband gave me the sweetest card from the twins.
It was an exhausting pregnancy those first weeks. I was in good shape, but it had been a long time since I'd had a baby and I thought those days were over. Still, it was all coming together. I got a job interview and the situation was perfect...a child care center. I could bring the babies with me to work. I was upfront that I was pregnant...with twins. No matter!
On May 23rd, at 10 weeks, I went for a routine doctors visit and was so happy to see the twins on ultrasound again. This time, however, I could tell that something was wrong by the way the nurse was acting. I could see that she couldn't see Baby A's heartbeat. She said she was using an old machine and wanted to get me in to be seen by a tech with a new machine. So I went down the hall and a tech saw me right away. I will never forget the words she typed on the screen..."ck viab"...check viability. Well, they let me know that Baby A had no heartbeat, and that the baby had passed away sometime in the last few days.
I was devastated. I called my husband, and he came to the office.
I won't go into a lot of detail about the following days...we were shocked and scared, but Baby B was still with us, but measuring a few days behind, and was definitely smaller than its twin. I learned I had a 50/50 chance of passing Baby A or reabsorbing it. I hoped I would reabsorb it...it seemed the safest thing for the other baby. We decided to call the baby Casey, because we didn't know if it was a boy or girl and we liked that name.
I felt certain in my heart that at least one of the babies was a girl, and we had already chosen the name Lily for a girl. It was based on a dream I'd had a couple of years before that I had a baby named Lily...she was so precious in my dream and I never forgot it.
In the meantime, I had a second interview, and was offered the job. I was so happy about that. Despite our loss, things still seemed to be working out.
Anyway, another week passed and we went back for another ultrasound. The doc suspected there was a problem with the other baby because of the skinfolds at the back of the neck. We were opposed to having an amnio...I already felt the pregnancy was fragile and didn't want to take any chances. So we opted to have a nuchal translucency ultrasound in the next two weeks. It would measure the skinfolds and determine the chances that the baby had a chromosomal abnormality. At that time, we'd only ever heard of Down Syndrome, which we knew we had a chance for, given my age. Regardless, we would never terminate a pregnancy.
The nuchal translucency ultrasound put our minds at ease. Based on the skinfolds, the chances that the baby had a problem were something one in 277. Whew!
That relief was shortlived. Four weeks later we had another ultrasound and this time, spina bifida was discovered. It also seemed to be everyone's opinion that we were expecting a girl. I was so excited. I had longed for a girl for forever. I was really ready, after a son and stepson, to have some girly time in my life.
We were devastated (again) by the SB diagnosis. We quickly consulted with a pediatric neurosurgeon, who assured us that her lesion was in an excellent location in terms of prognosis. There was a chance that she would walk and be "socially continent." Meaning that she may not have to wear a diaper for the rest of her life. We were fearful of hydrocephalus, but even that sounded manageable. We were still fearful of a chromosomal problem, but the neurosurgeon said that in her experience, SB is not accompanied by a chromosomal disorder. Wow, another relief. We also talked to another couple who had an SB baby, and they also gave us hope. It wasn't going to be easy, but it could be done.
The perinatologist however, still thought there may be more going on, and highly recommended an amnio. We went ahead with it, just so we could know if there was anything else we should prepare for. In our minds, though, it was just a formality, because we were counting on the experience of the pediatric neurosurgeon.
The results came a week later. My husband got the call from the genetic counselor. When I came home from work I could see that something was terribly wrong and he'd been crying. He said something terrible had happened and then told me that our baby had Trisomy 18. And that it is fatal. It was also confirmed that she was a girl.
We called the genetic counselor together that night and talked to her for a long time. She gave us the facts. Trisomy 18 is fatal. Most babies die before or during birth. Of those who survive birth, most die within hours, days or weeks. Fewer than 10% see their first birthday. They have heart problems, feeding problems, kidney problems...their brains just aren't wired normally...they often can't suck, they forget to breathe (apnea) and they just don't grow and thrive.
Again, devastation. Again, we were resolved not to terminate. We named her Lily and vowed to love and cherish her no matter how short her life. As it turns out, it was an easy promise to keep.
At this point, we were almost midway through the pregnancy. The rest of the pregnancy was a blur of doctors appointments, prayers, tears and trying to adjust to a new job. We met people we would have never had occasion to meet: for example a couple in our city who had a living Trisomy 18 baby. Their baby girl was so sweet, so tiny, but so strong-willed. She was our inspiration, as were her parents who had blazed a trail of care for us.
I met a lot of people online during the pregnancy and there were hundreds of people sharing our story and our pain every day. Offering their prayers and their shoulders.
We were given very little hope by the medical community. In fact, there were some incredibly insensitive things said by those who have taken an oath to care for others. It was shocking. Fortunately, that was the exception, not the norm. Our primary perinatologist understood what our wishes were. We had made it very clear: our hope was to see our baby alive, and to have her see the parents who loved her so much.
As the pregnancy progressed, we had frequent tests done to see how Lily was doing. She did great on every test, though she was measuring very small. Her head basically slowed almost to a stop in its growth at about 25 weeks. Her limbs measured normal, and her belly was smallish. She passed so many tests...she was such a tough cookie. There were many, MANY people cheering for her at every turn. She had an uncanny ability to bring people together, and to bring out the best in people. So many people told me that because of her, they were more patient with their own children. Many other people told me that even though it wasn't their usual habit, they found themselves praying...for Lily.
We decided, together with our perinatologist, to deliver her at 37 weeks via c-section. We chose this because it seemed to provide her with the greatest odds for survival. Also, she still had the spina bifida to deal with. We had been warned that a surgeon may not want to operate, given her terminal diagnosis. But we consulted with the same surgeon we'd met before and she agreed to the surgery. Without it, we wouldn't have been able to hold Lily...her risk for infection (i.e. meningitis) would have been very high.
Well, this story is getting very long, but it's not over yet.
Lily was born on Monday, November 28, 2005 at 12:23 p.m., weighing 3 lbs 11 ozs, 17 inches long. She cried, and so did we; we were so happy to meet her. Her problems began almost immediately, when one of her lungs collapsed. She went into the NICU and never came out. However, her dad and I got to see her whenever we wanted.
The day after she was born, she was given a heart exam and her heart was far more complicated than anybody had known. (We knew before birth that she had a VSD--a hole in her heart--but the exam after birth showed multiple heart defects.) She also had apnea spells in which she just stopped breathing. Her kidneys were also fused together, so basically she had only one. The great news was that her eyes worked perfectly. So we got what we'd hoped for...she was born alive and she could see the parents who loved her so much.
She had her spinal surgery on the day after her birth. We didn't know if she would survive it, and in fact that day went very awry in terms of surgeons, but I won't spend another 10 paragraphs going into it. The bottom line is that she survived the surgery very well.
She was put on a breathing ventilator for her surgery and never came off.
Finally, we could hold her.
For the next three days, Lily continued to fight, but was losing ground. She became very jaundiced and received regular shots of morphine for pain. She had an IV for nutrition and I never got to breast feed her, though I pumped until a couple of hours before her death in the hopes that I would.
By Thursday, we had to make a decision. Her heart was going to start failing soon. We could watch her die from organ failure, or we could remove the ventilator and take a chance that she would have an apnea episode which would end her life. What a horrible choice to have to make.
We decided the most loving thing to do was to remove the ventilator. If she died from apnea, it would be peaceful, she wouldn't struggle and suffer. We waited until her grandparents and brothers had another chance to see her. They moved us into a little room off the NICU. We spent the night in there with her on our chests.
The next afternoon, we signed the DNR order. Then we had our photographer (Amy) come in and we removed the ventilator. We could finally see Lily without anything covering her face. Amy took beautiful photographs, and then left.
Lily stayed with us for a couple of hours before she had another apnea episode. In those hours, we held her, sang to her, talked to her, kissed her...and watched her monitor like crazy. Her heart rate went up for the first time in two days. She was more stable than ever, and so content when she laid on our bare skin.
But the apnea happened. I could see from the monitor that she was failing and I cried and begged her to stay with us. It just seemed too soon for her to go...but really, when is a good time? She really tried to stay, but just couldn't. She turned blue and ashen and became limp. She had "agonal" breaths...like last gasps. They were painful to watch. I was holding her when the monitor finally told us there was no heartbeat.
The nurse came in, and after a couple of minutes called another nurse in to verify that Lily had passed away. They took her from us and put her back in her isolette and confirmed that she was dead. Then they left us to hold each other and cry. I couldn't stop crying.
The nurse came back in after a little while and we asked her to unhook the rest of the monitors from Lily (who was still in the isolette) so we could hold her unencumbered. She did, and while she was doing so, she commented that even though it had already been 20 minutes, Lily was still having agonal breaths and it seemed a bit unusual. So she called the other nurse back in.
We were still seated in the cot and couldn't see what was happening. Both nurses were looking at Lily and then they turned to us and said they'd never seen anything like it...she had a faint heartbeat and was trying to open her eyes! They said she could linger for hours that way.
I will never forget the next thing I saw...they lifted Lily out of the isolette to bring her to us. She was PINK and CRYING!! It was only the third time I'd heard her cry. She wasn't lingering...she was wide awake and very present. Her eyes were wide open...more so than any other time we'd seen her.
We were beside ourselves with joy. I couldn't stop giggling and kissing her and thanking her for giving us this gift. She looked at each of us and then looked toward heaven. I was certain she was trying to tell us she'd already been there.
This time she had no monitors. We were completely focused on her and likewise her on us. She was so alert. We sang to her and kissed her and just loved her completely. We gave her water. The way that's done is with a little sponge on a stick put into sterile water. You then put the sponge to the baby's lips and some water goes in. I made a comment about how water was given to Jesus on the cross exactly the same way. She made funny faces and licked her lips. I kissed her on the lips and she scrunched her face up like she'd just sucked a lemon. She made us laugh so much. She was so beautiful and so quirky and so loveable.
She was so strong and brave to come back into her body just because she knew mommy and daddy were so sad. I cannot even imagine a more courageous and loving act. I told her that when she needed to go she could and we would be okay.
She stayed for almost another hour. Then she stopped breathing and just sort of drifted away, as if to sleep. It was very peaceful and this time she didn't have agonal breathing. The nurses waited a long time this time to call her death.
Her daddy and I were on a high because of the incredible gift she gave us and the way she passed.
I'm grateful even now for the way that Lily lived and died. She was my hero. But I miss her more than words can say and I ache to hold her again. I've prayed to her so many times to come back to me. That I could take care of her (and Casey) no matter what their problems are. That's what Mommies do. But I don't get that choice. As we knew from the beginning, it wasn't our choice to make when she would die. If it were, I would have had her outlive me by a very long time.
Anyway, that was a very long story, and I'm sorry. It felt to get it all out, including the details. My husband and I are not grieving the same, and it really helps me to continue to tell her story. (He's kind of done with the whole topic.) If anyone is interested, she has her own website:
www.lilykathleenbryan.com It has her photos, which have been made into a slideshow which plays to a song that my son wrote and recorded for her. It also has other things...as you can probably tell, I'm very proud of her.
~Kathleen