Samuel Jacobs

January 25, 2010
33 minutes

Our names are Josi and Dan Jacobs. We live in San Diego, CA and have a 2 year old son named Luke. We found out we were pregnant again with our 2nd child last May (2009) and couldn’t have been be more thrilled with this news!

At the end week 12 of our pregnancy, we had an ultrasound. This was the first time we discovered something wasn’t quite right. The doctor informed us that our baby’s bladder was slightly enlarged. He said this abnormality was probably nothing to worry about but still referred us to a perinatologist to have further evaluation done.

In week 13, we saw the perinatologist. Again, the bladder was reported to be slightly enlarged, measuring @ 7mm, which was only 1 mm larger than a ‘normal’ fetal bladder at 13 weeks gestation. The doctor then gave us a printed handout with research on enlarged fetal bladders for babies in the first trimester. The conclusion of the study was actually very positive, indicating there was a 90% chance all would be fine and our baby would be normal and healthy. The other 10% were cases of Trisomy 13, 18 and 21. We were able to confidently rule out that the problem was definitely not a urinary obstruction because in those cases, the bladder sizes were usually 15 mm or greater.

Even with a 90% confidence of a normal healthy baby, I must have sensed something was not right, because for the next 5 weeks I made myself absolutely miserable with worry. I completely immersed myself in on-line articles and medical journals involving enlarged fetal bladders. I think I was hoping to find greater confidence all would be OK. However, I was unable to find it. There is not a lot of research done in this area. I did not do well with the ‘unknown’ and did not put my faith in God. Those 5 weeks were the hardest 5 weeks of my pregnancy. I underwent many sleepless nights and my mind was filled anxiety.

In week 17, I received the results from my AFP blood work. My AFP tested positive with a MoM value of 4.05. Even with this positive test result, my OB attempted to reassure me that most of the time, AFP scores come back with false positive results. Despite this hopeful prospect, I knew something was wrong with our baby. I discovered that a positive AFP could indicate there is a neural tube defect (NTD). This threw for me a loop me because I didn’t understand the correlation of seeing an enlarged fetal bladder in the first trimester and what that had to do with a NTD.

In week 18, we had another ultrasound performed. I had so many so many fears and questions going into this visit but still holding on to some shred of hope that all could be explained away once the doctor had a closer look at our baby. Because of the positive AFP result, our ultrasound was conducted at a UCSD genetics office. The ultrasound took over an hour to be performed and another 10 minutes for the perinatologist to review the results. The doctor finally came into the room with a grim look on her face and accompanied by two other genetic specialist (in training). The walls seemed to close in around us and my heart sank. I didn’t understand why our baby required so much attention if this was only a NTD. The doctor started out by saying “Your baby has many abnormalities that we are very concerned about.” She asked if she could take one more look at our baby to confirm what the sonographer captured in her images. We agreed and it only took a few minutes to confirm her findings. She reviewed each of the abnormalities, one at a time, pointing at the live image on the computer screen so we could follow her descriptions easier. Defects found in this 18-week visit include: meningomyelocele (NTD) at the sacram, cleft lip and palate, dilated kidneys and bladder, large cyst on the umbilical cord, polydactyly on both hands and feet and our baby measured 2 weeks smaller than the real gestational age. She said there was a possible heart defect but this was inconclusive. We managed to stay calm at first and ask about the severity of each thing. Finally, the doctor concluded what we were dreading to hear. She stated that she believed there was a primary source for each of these defects and our baby’s condition was either Trisomy 13 or 18.

The doctor recommended an amniocentesis be performed to confirm this diagnosis. We agreed and the procedure was performed very quickly. About one week later the results came back and confirmed our baby indeed had full Trisomy 13 and that he was a little baby boy.

Both the OB and the UCSD perinatologist strongly encouraged termination at first, suggesting we do not need to put ourselves through more emotional turmoil than what we were already experiencing. Aborting our baby was and will never be a consideration for us. Only God has the decision to take a life. Once we informed the doctors of our decision, they began providing us resources to support groups and hospice info.

Now we had a name for our baby boy’s condition. We started to take steps for what this could mean for our future. Of course, the first couple of weeks after the ultrasound diagnosis were initially hard for both my husband and I. We both took a few days off work to process and digest the new information relating to our unborn son’s condition. However, soon thereafter we started finding great strength in one another. We started gaining peace in our hearts knowing that all will turn out just as God meant to be. We completely put our trust in God, our Lord and Savior. We also leaned on fellow Christians, asked for prayers and decided to create a blog to keep friends and family updated on our pregnancy. http://jacobs-family-blog.blogspot.com We took each day one at a time and did not want to let any part of the pregnancy go by without enjoying every moment we had with our little guy.

In week 28, we decided to switch to a different OB who deals in high-risk pregnancies and who could deliver our baby at a hospital equipped with a level-3 NICU. We made this decision in the chance our baby was born alive and was strong enough to undergo medical procedure(s). We knew that our son’s NTD was pretty severe and babies born with a NTD generally require closure of the neural tube opening within 24 – 48 hours after birth because of risk of infection. We had to ensure there were surgeons on staff at the hospital who could do this procedure for us if we decided to take this route. Our former hospital did not have this capability, but the new one did.

Whether or not to medically ‘intervene’ or chose comfort care weighed heavily on our minds for the remainder of our pregnancy. We feared, at one end of the spectrum, that our son could pass away during a medical operation (and not in our loving arms) because he was not strong enough to endure such a procedure. On the other end of the spectrum, we feared that if we didn’t medically intervene and he WAS strong enough, he would die anyway due to our hesitation/negligence. He would die because infection would eventually set in because his neural tube had remained open more that 48 hours (the period of time when he desperately needed medical attention to surgically close the neural opening).

We prayed to God that He would make it clear to us which path to take. We also talked with people and read other families’ stories. One particular opportunity, we had the pleasure of talking with a woman residing right here in San Diego. She was a Christian woman who gave birth to baby girl with Trisomy 13 ten years ago. She and her family chose comfort care for the 7 ½ weeks their baby lived. God gave them the strong conviction and peace to make this decision. Additionally, I read about other Christian families (on this website) choosing the medical intervention route with the help of God. I completely understand these families’ reasoning as well. We were definitely at a cross roads and decided to put it entirely in God’s hands and wait until Samuel’s birth to make this decision.

We scheduled our induction date for January 29, 2010. This was a little over 1 week until our baby’s due date (February 7, 2010). We scheduled the induction because we felt very strongly about wanting our own OB to deliver little Samuel and we wanted to speak with the neonatologist on staff that day prior to being induced to prepare him/her about our son’s condition and the potential need to medically intervene. We knew we would have to depend on the neonatologist’s expert opinion to talk to us about our baby’s condition after he was born.

Despite our laid plans for Samuel’s birth, we had no idea he was making plans of his own for when and how he would enter this world. At 5pm on January 25th, my water broke. We rushed to the hospital quickly since I knew my labor would not take very long before Samuel was born. I knew this because my last labor with my first son only took about 5 hours. Once we arrived we spent about 2 hours in the hospital triage center monitoring my contractions and the baby’s heart rate. Because I was in a bed the entire time, my labor was not progressing very well. But as soon as we were transferred to our labor and delivery room, the pace of my labor picked up greatly. My plan was to have a natural birth and not use any drugs. I had all of 10 minutes to walk/look around the delivery room before my contractions kicked in something terrible and I could barely make it to the bed. The nurse immediately checked and I was 7cm already! Less than an hour ago in the triage center, I was only at 3cm. I pleaded for pain medication at this time but things were progressing too rapidly and it was already too late. Within 5 more minutes I was at 10cm at ready to push. The doctor was still not in the room. I had to breathe through 3 more agonizing contractions before the doctor arrived. Once he did, he threw on his hospital garments within seconds and got into position. Within 3 pushes, Samuel was born alive!

Samuel’s arrival time was at 9:57pm. He was not strong enough to cry, open his eyes, or completely gain a full pink color through his intermittent breaths but his heart was beating and he was breathing! The doctor placed him on my chest immediately after his birth. He was so perfect and beautiful, even more than I imagined. The outside world was not there anymore. I felt such an overwhelming sense of calmness and deep love for this little child of mine who now lay on my chest. We had the opportunity to do the kangaroo care (skin to skin) and he seemed to enjoy that. He was warm and so soft to my touch. He appeared completely comfortable and we were enjoying every minute we had with him. Samuel was then wrapped up handed over to his dad’s arms to have some time with him. At 10:30 pm the nurses did a final check and confirmed that Samuel had passed away. He lived for 33 very short minutes. We then called for our family to join us in the delivery room as we said our good-byes and took pictures with our sweet little guy.

He remained with us for the next 15 ½ hours after being transferred to our post partum room. We just couldn’t let him go. We knew his perfect soul was no longer in his frail little body, but somehow it was so much more comforting to have him with us. We didn’t want to go back to the room empty handed. Sleep was overrated at that point and neither of us could take our attention from him. We got to study his wonderful little features. We got the opportunity to note how he looked so much like our other son Luke. We got the time we needed to pray together, weep together and pray over him. We really enjoyed and treasured the time we had with him.

We are so thankful to God for letting us be Samuel’s parents and allowing us the time we did have with Samuel. We prayed so hard to have some time with our little boy and God responded! He knew our hearts and desires. We take comfort knowing he is now in the arms of Jesus. He has blessed us with so much in life already and though this experience was very hard to endure we both would not change it for the world. God is now giving us the strength and comfort to get through this rough period and we know our lives will forever be enriched by this whole experience; in our relationship to each other, to our son Luke and to our friends and family around us.
 
Josi and Dan Jacobs
josi.jacobs@gmail.com