At 21 weeks into our pregnancy we were devastated to learn that our daughter, Carleigh McKenna, has anencephaly. We realize that Carleigh will look different physically and will have facial anomalies. We hope that everyone can see her for what she is, our beautiful little baby. We may only have seconds or minutes with her, but we may also be blessed with hours or days. As Carleigh’s parents, it is our greatest wish to be able to cherish every moment we have with our baby, in a loving and caring environment. We have compiled this list of requests and wishes regarding her birth and care in order to make this experience as easy as possible for all involved. Please do not hesitate to ask us for clarification if it is needed. Please don’t mind if we change our wishes at any time. Our wishes all revolve around our need to spend as much precious time with Carleigh as possible and to prevent her from suffering during that time. Our wishes are as follows:
- We ask that our daughter be referred to as Carleigh.
- We wish to have a sign placed on our door that designates what type of situation Carleigh’s birth is. We prefer not to have extraneous staff entering our room without speaking to our nurse first (i.e. housekeeping, dietary).
- If possible, we request nurses specifically trained in bereavement.
- We are participating in a research study conducted by Duke for neural tube defects, which includes anencephaly. For this study blood must be collected from both Anthony and Holly. Also, cord blood must be obtained after Carleigh is born. Supplies have been provided by Duke and can be obtained from Anthony or Holly. Directions for obtaining the cord blood and blood samples from Anthony and Holly will be provided along with directions for packaging and sending all samples. If any questions arise a Duke researcher can be paged at XXX-XXX-XXXX.
- We are planning on a vaginal delivery. We prefer not to have continuous fetal monitoring during labor and delivery unless we request it. Periodic monitoring of heart tones is preferred. In the event that Carleigh’s heart tones are undetectable or decreased we may request an emergency cesarean section. If this were to happen, we would like Anthony to stay with Holly at all times.
- We have arranged for a photographer, Ashley XXXXX, to be present during labor and delivery so that neither we nor our family has to worry about taking pictures. Also, Lindsey XXXX will be taking video immediately after Carleigh is born. Please accommodate these ladies as much as you can. Any pictures and video they obtain will be very important to us to look back on.
- Holly would like to freely change position during labor. Suggestions regarding positions for laboring and later for birth are welcome, in the hopes that a proper position can help to diminish pain and make contractions more effective.
- Assuming they do not rupture on their own, please do not rupture the amniotic membranes artificially. The membranes and fluid will help protect Carleigh's head during labor and delivery. We feel this will increase Carleigh's chances of being born alive.
- As long as it is safe for Holly, we want her to be able to hold Carleigh immediately following delivery. If Holly is unable to hold Carleigh, we would like Carleigh to be handed to Anthony. We wish to cherish all the time we have with her. Every second counts.
- We want Carleigh’s airway to be suctioned as soon as she is born to help her breathe.
- We would like mechanical assistance to be used only temporarily to initiate Carleigh's breathing. We do not want any extraordinary measures taken to maintain breathing or to initiate her heartbeat. We request that blow-by oxygen be available if we want to use it.
- Since it is possible that Carleigh is going to be with us for only a short amount of time we want every second possible with her in our arms, beginning from the moment of her birth. Please delay (or even prevent if possible) any procedures that can be put off until later. If any procedures must be done we ask that they be done while Carleigh is in our arms.
- We do not want a hat directly applied to Carleigh’s head. We want sterile dressings applied first and have information on hand to help with this.
- We would like Carleigh to be kept warm with the use of kangaroo skin-to-skin care, warm blankets, hats, or the radiant warmer if needed.
- We do not want to have any routine admission medications given, such as erythromycin ointment, or Vitamin K, nor do we want her blood sugar monitored unless requested.
- We ask that you give us privacy, without abandoning us. Encourage us to do whatever feels right.
- We do not want Carleigh to be taken from the delivery room at any time, by any person, for any reason.
- If Carleigh lives long enough we would like to feed her. Our first preference is breast milk. If Carleigh is unable to nurse, Holly would like assistance in expressing colostrum/breast milk to give to her either by spoon, syringe, or bottle. If none of these methods work we want her to be tube fed.
- In the event that Carleigh does not die immediately, or soon after birth, we may consider having an IV inserted for the administration of pain medication. We wish to make Carleigh’s time on earth as pain-free and comfortable as possible.
- In the event that Carleigh is experiencing severe seizures and seems uncomfortable or in pain, we may consider the administration of anti-seizure medication.
- We want to have Carleigh dedicated to the Lord at our request. Our pastor, Mark XXXXX, is aware of our wishes and will be present to assist us with this.
- We want the nursing staff to weigh and measure Carleigh when we request it. Should we forget to request it, please do it prior to her leaving the hospital.
- We would like the opportunity to give Carleigh her first bath.
- We have brought clothing for Carleigh, which we would like to dress her in. We do not want these clothes to be removed at any point or by any other person than her parents. Carleigh is to be wearing these clothes when she leaves the hospital.
- If Carleigh looks like she won’t survive during our time in the hospital we want her to be with her and holding her in our arms when she leaves us. When she has passed please notify staff members who will come in contact with us. Please do not take her away from us after she passes. We will let you know when we are ready. If we are blessed with the opportunity to take Carleigh home with us please give us advice on how to feed her and care for her head (with dressings etc.).
- Please do not allow anyone in our room without talking to us first. We would like to have the option to bring our family to in the room to meet Carleigh and spend time with her. We ask your assistance in keeping them updated as we request it. We might need your help with phone calls and getting visitors in when we are ready. Carleigh has family that is very eager to meet her. If possible, we want them to be able to spend time with Carleigh while she is still alive. Time is of the essence for us and we do not want any avoidable regrets or missed opportunities.
- Any keepsakes that we leave with Carleigh, such as blankets, loveys, hats, and jewelry, are to remain with her at all times, even when she is taken from us. These items will possibly be placed later in the casket with her or stored in our memory box.
- We do not want Carleigh to go to the morgue at any time. We request that the hospital contact Fisher & Edgington Funeral Home directly when we are ready to say goodbye to Carleigh. We wish for her to be picked up directly from us and be taken by a staff person from the funeral home. We have made prior arrangements for this. Fisher & Edgington Funeral Home can be contacted at (XXX) XXX-XXXX.
- We have contacted Kim XXX, who is affiliated with Now I Lay Me Down to Sleep, a bereavement organization, and have arranged for her to come to the hospital and take professional pictures of us and our baby if she passes while in the hospital. We ask that you accommodate her in any way that is helpful. Her number is (XXX) XXX-XXXX.
- If any caregiver has a suggestion or an idea that you think may be helpful, please share it with us, as there are many things we might not have thought of.
- If any nurse, doctor, or other caregiver on our team is uncomfortable with any of this, please excuse yourself from our care if possible.
- We would like to have as many keepsakes and mementos as possible. Please save the following items for us to take home:
- the bassinet card
- baby blanket
- any photographs taken by the hospital
- hospital ID bracelet and cord clamp
- hand and footprints (we also wish to have footprints put in books we have brought with us)
- mold of hands and feet (we have kits with us)
- lock of hair if possible
- clothing Carleigh may have worn
- heart rate/contraction strips from any monitoring
- and any other things you think we may wish to have
This is a very difficult time for all of us. We truly appreciate your help and support, and ask that you understand the varied range of emotions we may experience. We also appreciate and find comfort in your expressions of grief, so please do not hesitate to show your emotions in front of us. We have tried our best to prepare for our short time with our little Carleigh. Saying “Hello” and “Goodbye” in such a short period of time will not be easy. With your help and support we hope to make this time as meaningful as possible.
Anthony & Holly