Our New Family July 2010

Our New Family July 2010
Our New Family

About our family...

Our family started on June 2, 2000. We have been married 10 years. We have three boys (Drake 5, Warner 4, & Henry). Michael is the Executive Director of Utah Shared Access Alliance (USA-ALL) and a state lobbyist. I am a registered nurse, and a third-year law student at BYU. Drake is starting Kindergarten in the fall, and Warner is getting ready to start pre-school in the fall. Henry arrived July 7, 2010. Henry was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and passed away, after 32 hours, on July 9, 2010. This blog provided updates on what was going on with Henry, and gives a little insight into our thoughts through the challenges we faced during his birth and death.

Be sure to read "The day we found out our baby has HLHS," under must read blogs, and if you want more info about HLHS there is a link in the right column that is a brochure from Mayo Clinic about HLHS.

Wednesday, June 30, 2010

C-Section Date Set

It is officially set. I will be delivering Henry at University of Utah Hospital on Wednesday July 7th. I hope to make final arrangements in the next week, and prepare myself physically and emotionally for that day.

Tuesday, June 29, 2010

Meeting Our New Perinatologist

We met with Dr. Byrne today. She is a perinatologist at University of Utah Hospital. She has agreed to deliver me. I was surprised at how much I liked her. She exudes confidence and authority but at the same time treats me like I am not an idiot. It is always frustrating when the Dr.’s talk to me like I am in Kindergarten. That’s why I fired the last perinatologist Dr. Gainer at UVRMC. Dr. Byrne specializes in fetal anomalies.

While talking to her and reviewing my medical history, previous pregnancies, and records and ultrasounds from this pregnancy she discovered that the placenta is anterior and covers my previous C-section scar tissue (which I had realized when I had my 23 week ultrasound). I was impressed that in such little time she made this discovery and instead of messing around trying to figure out what she thought my due date was she actually performed her duties and uncovered something that could result in significant complications. My last perinatologist could not even figure out my due date (even though several ultrasounds coincide with my very accurate calculation).

Dr. Byrne ordered an immediate ultrasound to determine if the placenta was going to present a problem. She also informed us that there is a possibility that I have a placenta accreta. Placenta accreta is a severe obstetric complication involving an abnormally deep attachment of the placenta, through the endometrium and into the myometrium (the middle layer of the uterine wall). There are three forms of placenta accreta, distinguishable by the depth of penetration.

The placenta usually detaches from the uterine wall relatively easily, but women who encounter placenta accreta during childbirth are at great risk of hemorrhage during its removal. This commonly requires surgery to stem the bleeding and fully remove the placenta, and in severe forms can often lead to a hysterectomy or be fatal. Placenta accreta affects approximately 1 in 2,500 pregnancies.

Mine is not an obvious accrete, but it is common for the placenta to attach to the previous C-section scar tissue. The scar tissue is not vascular and obviously the placenta is highly vascular causing the placenta to grow deeper into the uterine wall in search of the blood supply that it needs.

Dr. Byrne believes that she will be able to go below the old scar line and we won’t have to do a midline incision, but we will have to wait to see about the placenta accrete until delivery.

Dr. Byrne is arranging the date and time for the C-section and will get back with us.

LDS.org - Relief Society Chapter Detail - The Salvation of Little Children

LDS.org - Relief Society Chapter Detail - The Salvation of Little Children

Saturday, June 12, 2010

Meeting A Family Who Chose Comfort Care

We met with the Carbon’s to talk about their daughter Elizabeth born in January 2007. Elizabeth was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) just like our baby. The Carbon’s chose comfort care and it was very helpful to talk to them about why they made the decision and the effects of that decision.

As we spoke to the Carbon’s the weight of their grief fell upon me. After more than two years the sadness that exists in their life is still overwhelming. This couple seems to be a very spiritually in tune couple that believes the decision they made was absolutely the correct decision for their family; even with that conviction and resolve in their decision there is much grief and sadness. Their grief and sadness felt to me like despair. I am fearful of the same fate in my household. Will the sadness of losing a child seep into my home? Will the sadness cloak and overshadow all other joy or happiness that could take place? The thought of being so sad for so long is very frightening.

The Carbon’s helped us understand details about the birth and the short life of an HLHS baby which has further prepared us for Henry’s birth. They also informed us of what to expect with hospice care. They talked about how their two older children dealt with the death, which gave us insight into what to expect and how to help Drake and Warner deal with the loss of their brother.

We are planning on Henry coming home with us from the hospital. The Carbon’s baby, Elizabeth, lived 15 days, and sadly she died on Valentine’s Day. How can something so tragic end even more tragically. Forever Valentine’s Day, at least for their family, will be a time of sadness instead of a time to express love. Today I am 90% for comfort care.

Thursday, June 10, 2010

A visit to Primary Children's Hospital

We met with the palliative care team at Primary Children’s Hospital. I am impressed with the time they gave us and the genuine concern that they have for our family and the difficult decision that we are making. The team consists of several professionals including the fetal heart coordinator, a pediatric resident, Chaplin, nurse practitioner, and social worker. The team spent 2 hours with us discussing some of the challenges with the decision we are making. I am thankful that they are so interested in the reason that supports our decision. At first glance a person might be offended by this, believing maybe that they are questioning the reasoning, but really they want to understand why we made our decision so that they can further support our choice through the care they provide before and after the birth of our baby. At the completion of this meeting Michael is about 90% in favor of comfort care and I am about 80% in favor of comfort care.

While we were at Primary Children’s Hospital we also got to meet with the pediatric cardiologist. We met with a different cardiologist and I liked how she interacted with us better than Dr. Menon. She answered many questions. Its interesting how one question leads to another question and yet another… One of my biggest concerns about doing the surgeries is the chance of mental disabilities. Having a child with a physical disability like HLHS is hard enough but I do not want to inflict the pain and suffering of this physical disability on a baby/child if they are also going to have to endure a mental disability. The cardiologist told us that the chance of a severe mental disability is unlikely. This helped relieve some of my concern, but also it created more internal conflict about which decision to make. At that point I was about 60% in favor of comfort care.

We also visited the cardiac ICU and an HLHS baby that was born just a few days before. He had undergone the Norwood procedure about 48 hours before our visit. Seeing him lying in the warming bed was not too shocking for me (since I have worked in the ICU with all the monitors and IV’s and lines etc), and Michael even seemed to handle it well. The baby was still intubated and on a ventilator, he had 8 IV pumps/lines attached, I am sure some antibiotics and others were medications to control his heart. He also had an arterial line, central line, 3 chest tubes, and Foley catheter. In addition his chest was still open and will stay open for a while longer until the swelling goes down so not to cause compression of the heart when closed. You can imagine, very little of the baby actually showed underneath all of these lines and equipment. In some ways I think that Michael dealt with the sight of this beautiful baby attached to so many scary lines and equipment very well, but I think that’s because he does not believe that our baby will ever be in that condition.

As you can see our decision is tortuous and my conviction in comfort care does waiver a bit; although, I have never leaned towards doing the surgeries.

Tuesday, June 1, 2010

Meeting an HLHS 3-Year-Old

Michael and I finally had the opportunity to meet with a family that has a 3-year-old with HLHS. The Shumway family lives in Provo and they have 7 children total. Timothy, who has HLHS, is the youngest. Interestingly enough the Shumway’s brother, Doug Shumway, is a 3L at BYU Law with me. We met at their home and were privileged enough to visit and interact with Timothy. The Shumways were so kind and open about the experiences they have had with Timothy both before his delivery, throughout the surgeries, and up to his current condition. I am very thankful for the willingness they had to share their very private, personal, and emotional experiences with us.

There are several significant advantages that they have over us. First, Kathy, Timothy’s mother, is a super mom; she is a much stronger individual both spiritually and temporally than I am. This attribute has dramatically impacted the success that Timothy has had throughout the first 3 years of his life. In addition, Timothy’s father is a professor at BYU, and through his employment has financial stability and exceptional healthcare benefits.

It was amazing to meet Timothy and discover a 3-year-old who ran, played, and even jumped on the trampoline with Drake and Warner. Besides his faint sterna incision scar, he is a normal 3-year-old. Actually he is developmentally advanced for a 3-year-old.
Kathy shared with us many things including her thoughts and struggles through each of the surgeries, how Timothy coped with each of the surgeries (both mentally and physically), and how the family coped with having their mom away from the home so much. In addition, she shared photo’s from the surgeries and hospitalizations; she even shared the itemized hospital bills for each of the surgeries.
There is one statement that the Shumways shared with us that pinpoints the decision that every parent having an HLHS baby must decide. Kathy said, “You have to be prepared to deal with and accept the very worst HLHS situation that could happen.” They decided that no matter what condition Timothy ended up in, whether he died during the surgeries, lived until he was 20, was mentally/cognitively normal, or if he had severe mental delay, they were prepared to accept the circumstances.

Obviously this is where the similarities in our decision end. Michael and I agree that we do not want to go through the struggles associated with the surgeries to have our baby die at 2 weeks, 2 months, or 2 years. We do not want to see a young child deteriorate knowing every day that their condition gets worse. Even though dealing with the death of a child results in extreme sadness and heart wrenching grief I choose that over looking into the face of my 5-year-old and seeing the recognition and realization in his eyes that he is dying. Furthermore, we do not want a child to have to live and suffer through the surgeries and then have to deal with mental or physical handicaps.