PHASE 3 – The Action Phase

After talking to a mom of a child surviving these issues, I called our Insurance Company and validated our benefits.  I didn’t want the summary version of what was covered, but asked for a certificate booklet which goes into much more specific detail.  Upon review of these DETAILS, I felt relieved we could rely on our insurance to pay for our baby’s care regardless of his diagnosis. 

For those who are facing a similar situation, may I suggest you request or review a detailed certificate booklet in relation to your health insurance.  If you don't have health insurance and you are pregnant, you are eligible for Medicaid and should call your county DFACS office.  Even if you have good primary insurance, the DFACS office can provide you invaluable resources to connect you to groups or organizations that will help you in your search for information. 

After getting that off my chest, I felt like I could breathe a little easier.  I was able to spend more time thinking about how to prepare my kids to tell them about their little brother and how to cope with how I was going to communicate this to others.  With help, we gathered resources and pamphlets on grief, bereavement and coping with sibling and/or family death.  Reading these materials was very instrumental in helping muck through our emotions and helped us understand that we were grieving and that we needed help emotionally. 

Regarding Funeral Planning, we were terrified to even go there emotionally - to the point of tossing and turning at night, not sleeping and crazy dreams ... until I finally felt I had to face my fear.  I was amazed to learn after one conversation that several funeral homes offer free services ($0.00) for families suffering through the death of an infant.  Getting information on my childs funeral BEFORE HE WAS EVEN BORN WAS THE HARDEST hurdle for me to overcome in this phase of our journey; but I was finally able to be at rest inside my heart and head, and I began to think of giving my baby the best life possible after facing this challenge of fear and anxiety regarding his shortened life expectancy.   

It took us a long time to process basic information at first and this was a most difficult task to overcome in regards to begin thinking again.  After all, our brains were numb with the news, it was hard to think like we did before the news came, it was like we were broken or suffering from 'thought clots'.  Honestly, we didn't look into the details of certain things because despite the negative medical diagnosis, Anthony felt by me to be doing so well in my womb as he swam around and kicked to converse with me.     

During the first two months of our prenatal diagnosis, my husband and I decided to go to a family counselor to dump all this off our chest and she helped us work on goals in preparing for the talk with our kids.  I never realized how much stress we held to ourselves until we started letting it go.  Going to a family counselor to protect our marriage through these difficulties was probably the healthiest thing we did in this phase of our journey.  Our love for God, our family and each other shone through bringing us gracefully to an ability to cope with this situation. 

We finally shared this info with our three boys on Spring Break (Gestational Week 26).  We wanted a safe time they could manage their emotions away from others.  I don’t suggest telling children on a school night and expecting them to have good day at school the next day.  With the family week planned, we were able to commit ourselves to helping them with their emotional peaks and valleys.  Upon going back to school, it appeared our kids were better able to manage their emotions and know what to tell their friends.  Kids are resilient and the conversation went better than we had expected.  They asked a lot of questions and we told them what we knew but protected them from too much information.  We initially shared that their little brother has a syndrome that will not allow him to live as long a life as probably them.  We didn’t give any statistics on living or surviving but did say that he is at risk of not making to birth or maybe only living from one day, one week, one month, a year, or even to a teenager, perhaps beyond.  We didn’t know that answer, only God knows.  We teared up together and tried to keep the conversation as light as possible considering this heavy topic. 

The kid’s questions continued for several months questions at a time and they continue today.  This sank in with them slowly and it was more stressful at certain times a new realization hit, but as I said, kids are resilient and Spring Break was our perfect opportunity for our family to work through a difficult time together and learn coping skills together as we all shared the same emotions and concerns.  Our family is stronger, closer and communicates more clearly due to this situation.  Anyone facing a conversation with their kids about a similar situation is free to contact me and I'll share places these resources and reading materials are available for free in your area.   

It took us another month and a half beyond that to finally get all our doctors on the same page to minimize the "world against us issues" they had with supporting our decision.  We had to be very clear with them about our goal to bring Anthony home.  Our fight to be understood led to our birth plan or plan of care for Anthony.  Outlined below is a summary of that hurdle.  

For several months it was hard to visit our perinatologist, neonatologist and genealogist without getting an earful of fact based negativity and an earful of opinions on things we need to think about.  In many cases, these opinions were more persuasions as if our decision to end this pregnancy would have made them feel better about our choice. 

Terminating our pregnancy was not an option and we later invited all our doctors together about two months before Anthony was born to discuss our plan.  We met in a conference room at the hospital where I would deliver.  We included the chaplain, the prenatal loss team, high risk pregnancy team, NICU team and labor and delivery team along with our OB, perinatologist and geneticist/neonatology.  At our request, the hospital helped us to set this meeting with all of Anthonys and my prospective doctors.    

We began our meeting by telling them a little background about ourselves (we had learned the common questions everyone asks and we got that part out of the way … and we went on to reiterate (by name) the advice we were given by each doctor and that we understood the spectrum of issues our child would have.  We understood he could die a stillbirth, live only a few moments/hours/or weeks.  But we as parents also needed to prepare ourselves for what we needed to do if he also was to live longer.  That is where we shared our conviction that “only God knows the last day of this Childs life and we don’t want to be put in a position to choose that last day”.  We went on to say that we were asked to be parents and we were going to support and love this child all the days of his life and give him dignity and respect and comfort – for as long as God has chosen. 

So with that, we were looking for a team of specialist who could support us making sure that Anthony was treated as a “normal” healthy delivery as opposed to a high mortality child.  Each doctor spoke and explained why they had given such advice (to clear their conscience I suppose).  Some went on to reiterate the statistics and we acknowledged we understood those statistics but were looking for a team to support our family.  One by one, each stated they could support our efforts knowing that we were informed of the severe outcomes.  With that, we began to speak about a birth plan and a plan of care for after birth.  Based on the specific findings in utereo, we asked our doctors to help us with “what if’s” that may occur so my husband and I could think thru these difficult situations, including “end of life issues”, before they happen to be sprung on us. 

Here is a list of topics we discussed with our doctors that helped us form our birth plan for Anthonys prenatal and delivery care: 

NOTE:  For each of these items, Rick and I had to determine how far we wanted Anthonys medical intervention to go or not go in relation to these anticipated risks/issues in light of his diagnosis. 

• Heart Problems that are not detected until pressure develops in the newborn ... some holes go undetected (standard cardiac disclaimer)
• Cesarean vs. vaginal delivery – criteria for both
• Birth Defects and the impact based on type of delivery
• Lung Development, Feeding situations, Oxygen situations
• Major Organ development – Multi Organ Failure (Neural/Spinal, Digestive, Renal, etc.)
• Seizures, Apnea, CPR or DNR
• Intubation / Extubation
• Surgeries, and so on …

All in all, we had a lot to think about – and the only decision we made for him that day after we all agreed to be a supportive team was for Anthony to get special care in the NICU.  He would not stay in our room with us as it would prevent them from giving him the best care possible and it would allow the team of specialist to look him over and give him the best case possible with the hopes of eventually going home with our baby. 

We documented our birth plan based on our discussions and decisions from the above conversations and we are willing to discuss this with others who are facing similar situations.  Please feel free to contact us ANYTIME.  We are available to help with situational analysis (also known as "what if's") based on situations that arise from a prenatal diagnosis based on our experiences with this issue. 

PHASE 4 – The Anticipation Phase

The birth plan out of the way, we continued to monitor his prenatal growth and development closely with weekly visits to the perinatologist and OB and an occasional visit to the cardiologist for an in utereo EKG.  Each week new measurements on the calcium deposits on his heart, cysts on his kidneys, fluid in his brain ... and what looked like a sixth digit.  At the end of my 36^th week, the perinatologist saw what appeared to be a herniated umbilical cord or worse, an omphalocele.  He referred us to a surgeon that we had to meet prior to delivery.  Although the initial indicators of calcuim deposits, cysts on the kidneys and fluid on the brain had minimized in severity from a problematic view, the omphalocele pose his first true infection risk to survival after birth.  Due to this, Anthony was actually not doing so well on week 37 and was actually getting smaller in his abdomen.  The perinatologist called my OB and they schedule an induction the next day (38 weeks gestation).  Apparently, Anthony had a better chance of “making it home alive” if he were taken out of my womb and evaluated than going into fetal demise.  

For more information on preparing for a plan of care conference or creating a birth plan, go to our Trisomy 13 Planning Pages