Doctors, Nurses and Controversy, Oh My!

After finding out that Vivien had T-18 we made a decision to switch from our regular doctor who delivers at Valley Medical, to a group of doctors who are familiar with high risk pregnancies and deliver at Swedish. Our doctor recommended this to us, since Swedish has a better NICU and the ability to do more for Vivien when she is born.

But we had much to learn. The medical community generally looks at T-18 as a lethal diagnosis and advises very little intervention. “Incompatible with life” is a common phrase that you hear, although not from our doctors, thankfully. The sad truth is that most babies diagnosed with T-18 are aborted. Obviously because we believe we are made in God’s image, we see things differently. We want to give Vivien every support that she needs to live. At the same time, we don’t want to prolong suffering or try to keep her here if it is her time to go.

The first visit to the doctor was definitely eye opening. When we asked about the birth and about a c-section, his response was that they don’t usually do c-sections when babies have T-18 because the baby is “going to die anyway” and that would put the mother at risk. This made me angry, to say the least and I felt like a mama cat with her fur up and claws out. But it wasn’t a surprise as we had been told ahead of time that this was the general consensus of the medical community, even though we know there are many children with T-18 who have lived. The further we got into the conversation, the more we realized that “heroic measures” by the doctors’ definition were very different from our definition. A c-section would be nothing to us, even if it meant that she lived even a short while longer and we could meet her. Feeding tube and intubation right after she is born certainly didn’t seem like heroic measures, but ways to support her life. As we spoke to him further though, he made it clear they are willing to do what we ask when it comes to Vivien.The group of doctors there will listen to the parent’s wishes and that they will defer to us with decisions about her care.

At that point, I felt like the Holy Spirit spoke to me clearly to calm down, to love this doctor and to be gracious. We are going to be alert and do all we can to support Vivien’s life, but we need to not come to the table with an antagonistic view of the medical profession nor do we need to storm out in judgment. Everyone needs Jesus, including doctors and nurses who we may not see eye to eye with. We can be respectful, while making our wishes known and being alert to what Vivien needs and following through. The same people who may see her as one who is “going to die anyway” are the ones who actually have the skill and equipment to save her life and, if they are willing to do what they can then we need to work with them in a loving and respectful way. We ended up leaving that day on a positive note and with a good working relationship. Because there are 10 doctors and we have no idea which doctor will be the one delivering Vivien, we will need to be very clear in our birth plan and in making sure we understand everything being done for us and for her.

Since that first conversation, c-section, feeding tube, intubation, CPR, oxygen, surgeries and so much more are all words that have been swirling around in our heads. . Again, our best resource has been connecting with parents both of babies who have died and of those with living children on blogs, facebook groups, by e-mail and by phone calls. A general majority I would say are believers simply because those who choose to let their babies live rather than abort are often Christians, although there are loving parents out there who are not believers.

In talking about their babies, some have told us they wished that instead of staying in the hospital, they’d taken their babies home sooner to be able to enjoy the bit of time they had with them instead of having a plethora of medical procedures done that didn’t really extend their life. If babies are sent home to die they are generall given comfort care and hospice, and the families are able to spend time with them. Having their babies whisked away from them for intervention, instead of spending time with them didn’t bring about the results they’d hoped. This often happens to those who are not diagnosed with T-18 until after birth, as the doctors do much more for the babies if they do not realize that they have T-18 at the beginning.

Others have children who have lived longer, or are currently alive because of the medical procedures done, and because they fought tooth and nail for their lives. Some of them have truly had to go to bat to persuade the medical professionals to give their babies the care they needed, going before committees, or getting second opinions. For some, it is a great deal of work to find doctors and hospitals that would do these procedures or surgeries. In the end, they have enjoyed their children, who can laugh and smile and enjoy a good life, despite their mental and physical issues such as not being able to talk or walk. Parents have described them as life changing and a beautiful part of their family.

The “quality of life” issue is a very sticky subject, because who decides how quality of life is defined? Is it the parents or the doctors? One of my favorite stories came from Bella Santorum’s mother Karen. She said that Bella had just had a procedure done at the hospital recently and was doing well, sitting up in bed, playing with her toys, laughing and interacting, very clearly able to enjoy life, give and receive love. Karen looked over at a doctor standing in the doorway who was watching Bella and she was taken aback as she saw tears rolling down his cheeks. She compassionately asked him if he was ok, and his response was, “I didn’t know kids like Bella existed. I feel so lied to. In medical school all they teach us is that these kids don’t live.” She said he had this moment of joy to see Bella so happy and alive.

Some of the research can be frightening. Not only are there doctors who absolutely refuse to give care to babies with T-18 because of their philosophies, or because of the cost, there are also doctors who have changed the medications or care without informing the parents. While it would be nice to think that these are isolated stories or that they don’t happen often, unfortunately, it is much more common than we’d think. One family was sent home for “comfort care” for their baby, with a lethal dose of morphine. When the mother double checked with her pediatrician she found out the truth. She has helped other families as a T-18 advocate and said that this is actually something that is very common.

Thankfully, there are also stories of doctors and nurses who have worked hard and advocated for these babies, wonderful pediatricians and hospitals who have done everything that the parents have asked and more to help support their children and keep them alive. They have spoken with fondness of some of the most skilled and loving medical professionals they have known. And they get to know them well because though their babies live, there are still severe handicaps and much that needs to be done for their care.

One of the conclusions we have come to, is that there may be more hope for Vivien than we thought, if she is given care and intervention. The grim statistics we first heard about so many of these babies dying are actually a product of a philosophy of care, not because more cannot be done for them. At the same time, this is still a serious condition. We understand death can still come and if Vivien lives, there will be much care and time required. But we want to be ready to do what we can.

Listening to all these stories caused Todd and I to realize that fear could be a huge factor and actually lead our decision-making process, instead of the Holy Spirit. I know that when we meet Vivien, we could want her to live so badly that we fear her death and try to keep her when it is time for her to go. At the same time, we don’t want the fear of her suffering or fear that we will make a bad decision to keep from giving her the care she needs medically. We want to do all we can to give her life and support her.

As Todd and I prayed and thought through this, it was overwhelming at first. Both of us felt at different times and in different ways that the Holy Spirit said we didn’t need to decide everything ahead of time. We need to research, to be wise, to have a detailed birth plan and be ready. We need to be alert to all that the doctors are doing and clear that we want to be informed about all medicines and procedures. But there is so much that we will not know until she is born and the Holy Spirit is trustworthy to guide us then. Instead of looking to ourselves – and believing that every little decision we make could mean life or death for our baby girl – all we just need to obey the Holy Spirit. He has always made Himself clear to us. Trusting Him and obeying is actually relieving. It is not up to us, we simply have to trust and obey. If the doctors make a mistake, that is out of our control but not God’s. If we make a decision, believing and trusting God to lead us – if Viven lives, He is trustworthy. If it is her time to go, He is trustworthy. It was such a relief to realize that we can put it in His hands and leave it there. This truth has taken away much fear and anxiety.

In addition to this, I felt like God spoke to us about being a witness even to those doctors who may have a completely different perspective on Vivien’s life than we do.  I’m sure that there are those who believe they are being compassionate toward these babies, and though we may disagree, we need to not see them as the enemy, but again, as people who need Jesus.  We need to be thankful for a group of doctors who are willing to work with us.

We will be meeting with the neonatologist tomorrow and while the doctors we have seen are more responsible for my care and for the birth itself, the neonatologists in charge of the NICU will be the ones who will be actually making the decisions about the care of Vivien. We are very interested to know their philosophies and looking forward to the meeting with many questions ready.

Ultimately neither we nor the doctors are in complete control of Vivien’s life, but God is and He is trustworthy. We know that we can rest in this truth and trust Him to guide us. Please continue to pray for us and stay tuned to see how it goes…