Emotional Energy

It seems to me that my blog is such a mish-mash. I am partly writing about semi-recent history to continue our fertility journey. I love this part, this is the part about daring to look forward and what that has entailed. On the other hand, as I post these entries, real life continues to play out. The one year anniversary of Maggie and Patrick's births and deaths passed just last weekend. One year ago today I was at home with my PICC line, tender, stiff and overcome with grief. 

I do intend to post about how we marked the twins' births and deaths. But today I thought I would share my plethora of letter writing. 

My mother has always harped about writing letters - good feedback, bad feedback, all of it. Nothing will change if they do not know. (I wonder if she has taken her own advice!?) Given that my pregnancy with Maggie and Patrick and their lives have had such a profound impact on me and my family, I have always thought it was important to write letters of feedback. In fact, I wrote them while I was on my maternity leave after having the babies, but I could never find the wherewithal to finish them. Each time I read them (and when I originally wrote them) I brought myself to tears remembering the good and the bad. But today I went back to them. I believe I have finally found the emotional energy to finish those letters. (This makes for a very long post, but if you have the energy/curisoty to read them, feedback is welcome, as I have not actually sent them yet! Stamps and envelopes will be the next barrier to overcome!) So here they are:  

xx

To: Obstetrical High Risk Unit

CC: Social Work Department

The Ottawa Hospital, Civic Campus

1053 Carling Avenue

Ottawa ON, K1Y4E9

                                                                                                                    Monday November 3^rd 2014

From: Me

Re: Review of Experience

To Whom It May Concern,

           

            In August 2013, my husband and I presented to the Emergency Department, having been diagnosed with Preterm Premature Rupture of Membranes (PPROM) with Twin A in a rural hospital earlier that day. This was shocking and frightening news for us to hear; we were entering into an unknown journey. We are disappointed to report that during this most difficult time, we question the care we received. I wish to take this opportunity, on behalf of my spouse and I, to outline our concerns as they relate to our treatment at the Obstetrical High Risk Unit.

            At the outset, we acknowledge that the probable outcome of PPROM at 15 weeks gestation is poor. We did not, and do not, intend to suggest that the medical community’s response should be misleading in favour of blind hope. We do, however, strongly believe that the response should be sensitive, balanced, well-informed, and directed toward hope when requested by clients. This is not the experience that we had.     

            Upon first consultation with an OB in the Emergency Department, we were told casually that our pregnancy was “not viable”. We would argue that this information should be shared in a sensitive manner. During later appointments this was reiterated and termination was recommended; we were repeatedly told that our prognosis was “dismal” and “grim”, a message which continued despite the fact that I had not spontaneously miscarried, that both fetuses continued to grow, and that we had requested a pregnancy maintenance approach. Without providing specific examples, I can share that we left each appointment feeling completely deflated and hopeless – beaten down. We had to use our time between appointments to regenerate energy and hope.

            Although I ruptured at 15 weeks, I carried my pregnancy to 25 weeks. During this time we became as educated as we could about PPROM. Throughout our experience we were aware that the odds were against us but as each week continued, we chose to hope. The information and feedback provided to us by the staff did not reflect a balance insofar as they failed to acknowledge that some women do proceed to viability and beyond. In fact, some studies have found that ruptures in earlier stages of pregnancy tend to last longer and that babies who have had little or no fluid can survive once born, even if prematurely. The lack of information that might have reflected some level of hope, while continuing to acknowledge the reality of our situation not only reflects a poorly balanced approach to our case, but also it seems, poorly informed staff. It was communicated to us that the doctor had not treated PPROM in the case of twins before and that they were proceeding according to their singleton pregnancy PPROM protocol. We take particular issue with this because we had a second child in utero who was healthy and who would have a better chance of survival than Twin A.

Beyond this, while we appreciate that clients with many questions may be irritating for the busy staff at the High Risk Unit, we believe that it was of the utmost importance to educate ourselves. We aimed to use the appointments as an opportunity to verify gained knowledge and explore changes in treatment options. We were met with resistant and vague responses. It was often these negative, seemingly unwelcome conversations which contributed to our sense of defeat; the professionals who have the tools to try to help us to maintain the pregnancy as long as possible did not seem to have the time or interest in discussing PPROM treatment and future steps.

The fourth item I mentioned above was to work towards hope as requested by clients. What we were particularly surprised by was the neglect to transfer us to the General Campus, where there is a NICU that would be required if our pregnancy lasted until viability. As we gained more knowledge and met the practitioners more often, we became more concerned that the team was not treating the case for the positive outcome for which we were fighting and hoping. In line with our approach, we conducted more research and learned that the General Campus not only had the appropriate NICU, but also had practitioners who specialized in multiple pregnancies and high risk pregnancies. It seems to us, that we should have been transferred, or at the very least it should have been discussed, that other doctors and facilities may more appropriately meet our needs. Indeed, it is the marker of a truly competent clinician who knows his/her limits and can acknowledge them.

Ultimately we researched and consulted with doctors in Toronto and Ottawa before arranging a transfer of care to the TOH’s main campus. Although the circumstances of the pregnancy remained the same, we were met with honest and hopeful care. The doctors did not ‘sugar coat’ prognosis, but also rejoiced in progress made and planned for the future as appropriate. To be blunt, their approach was more respectful, evidence-based, and the bedside manner was far better than that which was offered at the Civic campus. Moreover, when I went into labour, I was in a facility that had the highest level of NICU available for my children and a team who were familiar with my case.

I am saddened to say that one of the best decisions that I made as a parent during my pregnancy was to leave the Civic campus. It is my hope that my feedback can be taken as a reminder that patients require time, respect, knowledge-sharing, empathy, and compassion.

Regards,

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To: Maternal Fetal Medicine

CC: Social Work Department

The Ottawa Hospital. General Campus

501 Smyth Road

Ottawa ON, K1H8L6

                                                                                                                   Monday November 3^rd 2014

From: Me

Re: Review of Experience

To Whom It May Concern,

           

            It has taken a year in order for me to find the emotional energy to finish this letter. In September 2014 I came to the General Campus’s MFM team after having had negative experiences elsewhere. I was prepared to advocate for myself and my unborn children, as it had become apparent to me that this would be necessary. At 15 weeks pregnant Twin A’s membranes had ruptured. I was all too aware of the probable negative outcome of my pregnancy but had chosen to persevere despite this and came to the MFM team in search of support and knowledge.

Thankfully (and finally) we found the respectful, balanced treatment we sought. The team members were able to provide us with medical support, while sharing both the negative odds and elements of hope. We were provided with reassurance and even cheerleading as the pregnancy progressed closer and closer to viability, until finally passing that threshold. Unfortunately, I was admitted to the hospital at 25 weeks, having become septic and in labour. The entire team continued to provide respectful support, explicitly gaining consent before moving forward in any medical treatments. I was lucky to have such attentive care.

            We were particularly touched by the attentive care that I received from Dr. K. Fung-Kee-Fung and Dr. J. Brown. They both went far above and beyond my expectations:

Dr. Fung-Kee-Fung demonstrated respect at every juncture of my pregnancy, of both my emotional reactions and my own knowledge of PPROM. She came to see me early in the morning that I had been admitted, as though she came directly to me upon arriving at work. My relief in seeing her – and in writing this, recalling that relief can still bring tears to my eyes – is a true testament to how strong our rapport was, built on respect, knowledge, and compassion. In the days following the birth, while she ensured I was receiving appropriate medical care, of the utmost importance, she was present for the difficult emotions I experienced as my children died four days apart. This continued to be true during my post-partum period. I cannot sing her praises enough.

Dr. Brown and I initially met at another hospital where I had a decidedly negative experience. She stands out in my mind because she was the only medical practitioner who acknowledged that I may have options other than termination, and that ultimately the decision rested with me alone. I did not see her again until I was in labour, a chaotic time, but I immediately felt safe knowing she was present. I knew that she would respect that we had made the best decision for us. My memories of Dr. Brown at the hospital are ones of sincere empathy and strong advocacy so that I could be discharged, despite logistical challenges with CCAC. Again, I am at a loss for words in how wonderfully she carried out her duties and how thankful I am.

Although these two doctors were important players in my experience, I know that this would not have been the case without the equally attentive support of other staff. Many clinicians demonstrated incredible tenderness, sharing in our tears and respectfully offering prayers.

           

With gratitude,

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To: Neonatal Intensive Care Unit

CC: Social Work Department

The Ottawa Hospital. General Campus

501 Smyth Road

Ottawa ON, K1H8L6

                                                                                                                                                                                                                                                             Monday November 3rd 2014

From: Me

Re: Review of Experience

Dear Dr. Ferretti and NICU team,

                After an entire year, I believe I have found the emotional energy required to write this letter. It is a letter of thanks as well as an opportunity to voice some of my concerns as they relate to the NICU.

On October 24^th, 2013 our family and lives changed forever; I gave birth to our twins, Maggie and Patrick, at 25 weeks gestation due to Preterm Premature Rupture of Membranes (PPROM) and complications thereof (sepsis). I advocated for Maggie and Patrick through 10 weeks of high risk obstetrical monitoring, and fought for them each day on home bed rest; a huge community of family and friends hoped and prayed for them. It was a difficult pregnancy as we faced poor odds, and Maggie and Patrick were always wanted and loved. There are no words to describe the heartbreak which followed as Maggie lived only short hours, and Patrick mere days.

               

The journey we have followed in the weeks and months since that time has certainly come with ups and downs, facing the grief of having lost two children whilst also overcoming my own poor health (sepsis and bed rest). Despite all of the awfulness that we have endured since October 2013, our appreciation of the NICU’s staff role has been unwavering. We believe that you and the team provided well-informed and constant medical support to both of our children during their short lives; given that they had such an ill-fated start to life, their only chance of survival was offered by you and your team, for which we will be ever grateful. It is in knowing that we, your team and us as parents, fought for them, which brings us peace in our grief even today.

               

Beyond your medical capabilities, we were struck by the compassion and tenderness demonstrated by all staff members. This was observed in daily functions like supporting me to visit Patrick, prompt my milk production bedside, and helping me to manage my own treatment’s side effects and complexities. Of most impact was the tenderness with which we were treated when Patrick’s health began to fail. Members of the team offered hands-held, tears, well-intentioned stories, while also respecting our space, privacy, and offering assurance that we were good parents in a difficult situation. We were touched by the staff’s attentiveness.

               

While appreciative, we believe that it is important to articulate our grave concern in one regard. We were informed that Patrick would be bathed after he died. We are still unclear as to whether we had a choice in this. As it is, we indicated that we would not participate in bathing him as we had said our goodbyes. The following week we were provided with a CD of photos of Patrick that were taken after his death. We did not consent to this. We had no knowledge of the intention to take photos of his body. As a result, we had an overwhelming sense of having been disempowered, excluded, and having had intimacy lost. How is it possible that having had only four days to parent him, that we had lost the opportunity to be his decision-makers? Our son had this tiny life, and yet we missed out on activities in which he (his body) participated? This was a violation of the intimate nature of our time with him and our connection as a family. To add insult to injury, the photographs falsely assign intimacy to items to which we previously had no attachment, like a stuffed toy we had never seen before. To be blunt, it is as though someone decided to play with the body of our deceased son, Patrick, and take photographs: a cruel, sick joke. We now have these items and photos as constant reminders of this deeply unsettling situation.

At the time of a child’s death, in my own experience, it is difficult to call upon one’s own abilities for self-advocacy. We strongly recommend that you ensure that parents are fully informed of their choices and the implications thereof. If the bath is an option, then it should be framed as such. For example, “Ms. and Mr. Jones, would you like your child’s body to be bathed? Would you like to do this?”, rather than a statement which does not communicate choice. I hope that it goes without saying that gaining parents’ consent is equally, if not more important, for photographs of a child after death. I had swaddled Patrick in a blanket we had for him, inside a little sticker was hiding which his older sister had placed. This memory was intended to be my last memory of him. Instead, I have photographs which show me that someone else swaddled him; the blanket was completely differently placed and my last image of him was changed forever. I am sure that taking photographs is done with the best of intentions and appreciated by some, you risk changing how a child is remembered and worsening the grief of a parent if it is done without the parents’ knowledge, understanding and consent.

Although we do hope that our concerns are taken seriously, we do not wish to have this undermine our appreciation. Our overall message is one of gratitude.

Regards,

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