Our son, Jonathan Steven Dobkowski was born full-term on May 17, 2003 and lived for one hour. His brief life has left a lasting imprint on our hearts...he has been our miracle.
My husband Walter and I found out we were expecting our 4th child in September of 2002 and we were very excited. I was due at the end of May. By the end of November, everything was going along well and we finally let our other children–Brian (then six and a half), Michael (then four) and Kristen (then one and a half) know that we would be having another baby in the family. I was then 14 weeks pregnant.
Three days later, my daughter accompanied me to my monthly obstetric appointment, which happened to be the day before Thanksgiving in 2002. I had a routine sonogram performed by the nurse in the doctor’s office. She was having trouble getting a clear picture of the baby and so she decided to do an internal sonogram. Once again, she was having trouble seeing a clear image and she decided to get the doctor to let him take a look. I remember being very calm at this point. I honestly thought something was probably wrong with their equipment.
The doctor came in and attempted to perform another sonogram. However, he also could not get a clear picture. I saw concern in his face like I had not seen before. He had delivered two of my children and I had never known him to be an “alarmist.” So I asked him what he thought the problem could be and he said that he thought I did not have enough amniotic fluid. I still did not see the severity of the situation. I told him that perhaps I wasn’t drinking enough water. I could see that he was hesitating...that he was not being fully honest with me. I started to cry and I remember saying to him, “I know I’m upset now, but I need to know what you think the problem is. I can handle it...please be honest with me.”
My doctor said that he thought the baby had a condition called Bilateral Renal Agenesis, also called Potter’s Syndrome. He thought the baby’s kidneys were absent–and that was why there was hardly any fluid. He went on to explain that amniotic fluid is made up of a diluted urine and one of the very important roles of the amniotic fluid is to develop the baby’s lungs. The baby breathes in and swallows the fluid and this enables the lungs to mature. And then the baby’s kidneys excrete it out again as urine (amniotic fluid). I anxiously asked him what the treatment was for this condition and he matter-of-factly said, “There is no treatment; you must terminate.” At this point, I really lost it. I had never heard those words before. My daughter consoled me–she patted me on the back and said, “It’s okay, mommy.” I was fortunate to have her with me...I did not realize that my young toddler could offer me so much compassion. I regained some composure and told the doctor I wanted to call my husband at work. I explained to Walter as best I could the news that I just heard. My husband came home as soon as he could. My doctor made an appointment for me at a radiology office for a more detailed sonogram later that afternoon. We heard the same news from the radiologist. He suspected Potter’s Syndrome also because of the extremely low fluid levels. The radiologist also recommended that we terminate the pregnancy.
We were so confused. We wanted and loved this baby so much. With Thanksgiving the next day, we tried as best we could to give thanks to God for all that we had and we tried to put our anguish to the back of our minds, at least for the day. Over the next few weeks, I cried all the time. We saw several other specialists, including perinatologists who deal with high-risk pregnancies. One of the specialists took a sample of the baby’s cord blood and did a chromosomal analysis on it. He determined that our baby was normal genetically and also found out that we would be having a girl.
Every single one of the doctors came up with the same diagnosis of Potter’s Syndrome...and they all recommended that we terminate the pregnancy. I remember asking if my baby could survive the entire pregnancy and when I deliver, the baby could receive a kidney transplant. They each thought that my baby could probably survive the pregnancy, but that the baby would die shortly after birth due to respiratory failure, NOT kidney failure. A kidney transplant at birth would not save the baby’s life as the lungs would not be maturing during pregnancy as they should due to the lack of amniotic fluid. We also inquired about the possibility of in-utero surgery and were told by each of the specialists that it was impossible.
Christmas was upon us and for the sake of our other children, we were trying to enjoy the spirit of the holidays. And our kids deserved their mother and father to participate in the holidays along with them. But how could we when the life of our unborn child was at stake? Walter and I started learning the difficult gift of hiding our pain from others so that we could function. A couple days before Christmas, we met with a friend of the family named Tom. He is a Theology professor at a local college and he encouraged us to be true to ourselves and make the best decision based on what we believed. And he assured us that God would be with us along the way.
This was a turning point for us. We have always believed that every life is sacred. Now we had to step up to the plate and be true to what we believed in. And as parents, we came to understand that we, not the doctors, were the ones ultimately responsible for our child’s well-being...and we decided we wanted to give our baby every chance at life, however brief it may be. So...our decision was made. We would continue the pregnancy and let God, not us, determine our child’s outcome. But I was overwhelmed about how I would continue with the pregnancy and feel the baby move inside me, knowing that the baby’s birth would probably also mean the death. How could I carry on with my life for all those months and endure the well-meaning questions/comments about the pregnancy? And how could I continue to function as a mom to our other children?
I called my obstetrician in early January to let him know our decision. I told him that we wanted to continue the pregnancy and give our child the best possible chance at life. He told me that we were taking the “harder road.” I asked him three times if he would follow me for the duration of the pregnancy. (He had never had a patient willingly choose to continue a pregnancy with a fatal diagnosis.) He said that he would follow me, but I could sense some reluctance on his part. I asked him for resources including support groups for women who choose to continue their pregnancies when the unborn child is diagnosed with a fatal condition. He said , “There are no groups like that available.” I asked for the name of another mom who had continued a pregnancy despite a fatal diagnosis and he replied that he did not know any. I felt very alone.
The day after I spoke with my doctor, I met with Sister Pat from my parish. She is the bereavement coordinator at my parish and a friend referred me to her and said that she would probably be able to help me and my family from a spiritual standpoint. She had never helped anyone with a pregnancy issue before, but my friend knew her personally and knew how compassionate and supportive she could be. I knew we needed help as this was proving to be very difficult for my family and me to endure. Sister Pat was extremely supportive to me and promised me that she would help us. She provided us with spiritual guidance and spread the word throughout the parish about praying for our baby and us. I saw Sister Pat on a regular basis–at least weekly...sometimes several times a week depending on how I was doing emotionally and spiritually. She encouraged me to take one day at a time and reminded me that God would walk this journey with us.
I felt somewhat better when our final decision was made. I tried hard to put our anguish to the back of our minds as I also wanted to try to enjoy the time I had with my baby. I tried to really feel and appreciate my unborn baby’s movements like I never had done before in any of my other pregnancies. I was getting bigger and bigger and began getting more and more comments about the pregnancy...innocent, well-intentioned questions and comments. For the most part, I did not let on to strangers about our ordeal–I actually did not want to sadden them... but word got around town about our situation and I was both amazed at the compassion we received from some and surprised by the judgments we received from others. Thankfully, our families, especially our parents, were very supportive to us. We learned first-hand the power of prayer. We had many, many people in town praying for our unborn baby and our family. Walter’s aunt in Connecticut who is a nun had people in different countries praying for us too! We were overwhelmed and truly felt God’s presence with us. We were praying for a miracle...that our baby’s diagnosis would be wrong and we would have a healthy newborn. But we also prayed that we would be able to accept God’s plan for Jonathan...whatever that might be.
My oldest son’s school social worker referred us to the local hospice, as she thought we would benefit from their help. So I contacted Mary, the social worker from Hospice Care Network (who is also the Director of Pediatric and Bereavement Services) when I was about 31 weeks pregnant. From the moment I spoke with her over the phone, I knew that she would be able to help us. She said that she had recently helped another mom in a nearby town when she was pregnant with a baby with a fatal condition. She asked me if I had a birthplan. I told her I didn’t–actually I wasn’t even sure what a birthplan was. She asked if our children knew about the baby. I told her that they knew that the baby was sick. Mary stressed the importance of telling the kids the whole truth...that the baby was expected to die shortly after birth. So, after mass the following Sunday, we sat the kids down and told them everything. It was very hard to say those words to our kids, but Mary was right...we had to. My oldest son, then 7, stated, “Oh, mom...I had no idea that the baby would die. I just thought since the baby does not have kidneys, you just wouldn’t have to change as many diapers.” I remember we all cried together and held each other.
Mary became an integral part of our family. She helped us create a birthplan so that our wishes and the wishes of our unborn child would be honored. Because of Mary's help, Walter and I began to feel a sense of control. We gained the courage and strength to advocate on behalf of our unborn child. Mary acted as a liaison between my doctor and me and also communicated with personnel at the hospital where I would be delivering. In addition, she provided bereavement support to my children on a weekly basis. Mary had also put me in contact with the other mom whom she recently helped. Her name is Chris and she was a tremendous support to me and my family and we remain good friends to this day. I have learned that there is nothing like speaking with someone who has "been there."
For quite some time, Walter and I felt my doctor was just “going through the motions” with us. We did not feel that he really understood what we were doing. And we also felt that he may be concerned about his own liability. We spoke with him and reassured him that we would not sue him...that we wanted to give our baby the best chance at life and that we wanted to have a little time together to collect memories. He softened to some degree, but he just did not seem to fully “get it.” He told us that our baby may not survive childbirth due to the lack of amniotic fluid, and he told us “I do not want to do a C-section on you because you already know the outcome of the situation. And I’m also concerned about the medical risk to you.” After many, many conversations with him and prayers and support from Mary, Sister Pat and Chris, we opted to choose a C-section if our baby’s life was in danger. We wanted to do everything we would have done for our other children. We let my doctor know of our decision. Now he REALLY thought we were crazy!!! He told us he was getting some resistance from some of his colleagues and the hospital staff where I would be delivering. Once again, Mary intervened on our behalf.
Things were in order, or as best they could be, I suppose. The birthplan was all set, the kids were getting counseling and it was springtime–I was due at the end of May. As it began getting warmer, I began having trouble (emotionally) making it through each day. I knew my baby’s birthday would also be the death day and it was very hard to handle. I would feel my baby’s movements during the day and I especially remember one time that my baby had hiccups. I had my hands on my belly and my 3 other children were feeling them too. I knew we would not be able to have too many memories and so we tried to cherish each movement.
My emotional reserves were being used up. I was exhausted, emotionally and spiritually. I remember one evening in early May, kneeling at the foot of my bed to pray, and I just started hysterically crying and couldn’t stop. My husband came in and offered to call the doctor the next day to ask if I could be induced. I agreed. But then the next morning, God gave me some more strength to carry on for another day. What a roller coaster ride....
On May 17, 2003, I awoke with some unusual symptoms. I was now 39 weeks. I called the doctor and he asked me to come to the hospital so he could check me. After examining me, he felt that I should have the baby that day. Walter and I cried. This would be the day that we had looked forward to (the day we would meet our baby) yet at the same time dreaded (because of the probable result). We called Sister Pat and Mary and they came to support us and were prepared to intervene on our behalf if needed. My mother and our children were at my in-laws’ house; both grandmothers would come with our children when the baby was born.
I was started on pitocin to induce labor. After a couple hours, my doctor asked us again if we were sticking to our plan about the C-section if our baby was in distress. We decided we would. Shortly after that, I requested an epidural and while in the sitting position, the baby’s heart rate dropped dangerously and I was rushed down to the Operating Room for an emergency C-section. I received general anesthesia as I did not have the chance to get the epidural because the baby was in distress.
Jonathan Steven Dobkowski was born at 3:28p.m. and weighed 6 lbs. 3 oz. and was 19 inches long. He had the healthy cries of a newborn and initially everyone thought the diagnosis was wrong. It turned out that the doctors were wrong about the gender of the baby. (Months earlier, we were told the baby was a girl. In fact, we were all referring to the baby as “Victoria Lynn” this whole time.) Walter was busy taking pictures and holding our little bundle whom we fought so hard for. Jonathan received some oxygen, but as time went on his breathing became labored. They reversed my medication and I became more alert. The nurse handed me Jonathan and said “you have a son.” A boy?? I was pretty confused, but I tried to focus on how beautiful he was. He turned his head and looked at me in the eyes and made some soft noises. I told him that I loved him.
By this time, Walter’s mom and my mom arrived with our 3 children. They were so happy to meet Jonathan. They were all able to hold him and we took many pictures. Sister Pat baptized Jonathan with everyone present. Walter handed him back to me, and after a few minutes, Jonathan became very quiet. The neonatologist came in and confirmed that Jonathan had died. He had lived just over an hour. We all cried.
The hospital staff was very accommodating to us. They honored our birthplan and gave us total privacy. We had time to collect memories, such as hand and footprints, pictures, a lock of hair, the blanket he was wrapped in. Sister Pat later gave us a teddy-bear that was made out of his blanket. We had many family members visit and hold Jonathan. It meant so much to us to have our family around us.
A week later, we had a full funeral for Jonathan. Father Gallagher celebrated a beautiful mass and we had a couple hundred people in attendance. Father Gallagher’s homily was about the book Water Bugs & Dragonflies. It is the story about the ugly water bug who turns into a beautiful dragonfly. He spoke about how here on earth we are like the ugly water bugs in a pond and that occasionally one of the water bugs climbs a reed and is transformed into a beautiful dragonfly. Because now his body is in a different form, the dragonfly is not able to come back to let the water bugs know that he is okay. He said that Jonathan can now be considered the dragonfly. He is free and beautiful. It was such a touching homily. We have heard from many people how comforting it was to them. (The dragonfly is now Jonathan’s symbol and it’s amazing to us the number of dragonflies we now see!) At the end of mass, Jonathan was taken off in a hearse. We felt good that he was treated with the respect and dignity that he deserved. We learned that the importance of a person’s life is not measured in time. Even though Jonathan lived only one short hour, his life impacted many people.
We continue to have difficult moments at times because we miss Jonathan, but we are grateful to God that we we were able to have some time with him. Because of Jonathan, we have witnessed God’s love for us. We may not have received a miracle because Jonathan was not physically healed, but perhaps the miracle was that we were able to spend precious time together and Jonathan’s spirit will continue to live on in the many people whose lives he affected.
We truly feel that Sr. Pat and Mary were sent to us by God to help ease our burden and we will forever be thankful for their assistance. Jonathan helped us to be grateful for the little things that we take for granted and we feel that our family has endured a difficult test and has therefore become stronger. Every night we pray that Jonathan will continue to watch over his family here on earth until we are reunited with him in heaven. We thank God for Jonathan...his life has been our miracle.