Camden Brown Gunnell
April 24, 2006 12:10pm—April 27, 2006 3:30am

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Mesa, Arizona (AZ) - Full Trisomy 13

Full Trisomy 13, diagnosed at 16 weeks in utero via amniocentesis

The day he was born was exciting. He weighed 4lbs and his length was 17 inches; very skinny. He was given very high scores for his Apgar-where they rate muscle tone, breathing, etc. on all newborns; and we were very hopeful. The neonatalogist who was there for Camden’s delivery checked him out, cleaned him up, wrapped him tight and handed him to us. Due to his condition the doctor had previously explained that all they were going to do for Camden is provide “comfort care”- keep him warm and make sure he is not suffering but that they would not provide any drastic medical care. They weren’t going to be heroes and attempt to fix a body that was so broken. Heather’s doctor finished the c-section and we were taken to a recovery room, until Heather’s body was able to respond after anesthesia and such. After 2 hours Camden started to get hungry and his blood sugar was dropping. The nurses started to give him 10cc of formula with a bottle and Camden had a very difficult time with that. The formula was regurgitating through his mouth and nostrils. He became extremely purple from the lack of oxygen. The nurses reacted quickly and cleared his airways so he could breath and actually had to resuscitate him. Later, no longer than 1 hour, the nurses fed him again through a feeding tube, Camden became extremely blue and needed to call in a team of specialists to revive him again. After these two episodes the doctors concluded that he needed extra special attention and we wanted him admitted into the NICU. While the nurses were trying to get an IV into his vein, he became very upset and began his episodes of not breathing. His pulse declined and his breathing stopped several times; probably around 5 to 8 times. The doctors were doing their very best while I was crying at his side. My mom and Rene, Heather’s mom, were there with me, while Heather was in the recovery room. For about 2 hours, the doctors were trying to stabilize him. After several times of having apnea spells for a moment when I thought he was not going to make it, I jumped up from my chair and gave him a blessing, after which he started to calm and stabilize. Heather was brought directly to the NICU in her hospital bed and I informed her that Camden was not doing well. I asked her what she wanted to do, I hated to see him suffering so much. I told her we needed to make a decision, he was so tired. The nurses placed him in Heather’s arms and a nurse took pictures of us together. Camden was still having trouble breathing, and he appears blue in those pictures. We didn’t want to make him stay because of our selfish desire to spend more time with us. While Heather held him my brother and I gave him a name and blessing. His full name is Camden Brown Gunnell. We told the doctors to leave him alone, to let Camden decide his fate, but to still monitor him and keep him oxygenated short of mechanical ventilation, and we left Camden with the team of doctors and nurses.
 
Needless to say the entire day was a totally emotionally draining and I went to bed thinking he was not going to make it through the night. I couldn’t sleep Tuesday morning and got up early to see him and spend time with him. From 4am Tuesday morning till Tuesday evening, he was doing fantastic. He had stopped having his breathing apnea episodes and had stabilized. He was very calm and snuggled up to you and loved to be held. He has some noticeable defects.  He has 6 precious fingers on each hand and never opened his eyes. His omphalocele was very small, and turned out to be no big deal. It is the size of a very large grape, looks more like a cyst, and sits right next to his little umbilical cord.  I was told that he had a heart murmur, but that later proved to be untrue.  We were very hopeful for him because of the drastic improvements he was able to make just overnight.
 
Wednesday was a very hard day for Camden. Wednesday morning the head NICU doctor, his resident and the social worker came up to our room to talk about what we wanted for Camden. He explained Camden’s condition-which we understood very well already-and let us know that whatever we decide they would do their very best to implement. He also explained that no doctor in this country maybe even world would operate on Camden to fix any problems he may have due to the fact that he has Trisomy 13. He also told us that Camden just had an apnea episode where he was not breathing for about 4 minutes and they were standing there watching him. No one was helping him, until finally his nurse gently touched him around his mouth and he started coming back. They stood by watching because we had told them “Do Not Resuscitate”, and that was the order they were following. Our understanding of a DNR order was that if Camden began having difficulty and goes into cardiac arrest then we didn’t want to have to use machines and chest compressions to keep him with us if his body was clearly fading. We did want them to help him breath, or clear out the mucus us he if was choking on it since he was not strong enough to cough. We told them to help him short of him requiring machines to survive. We changed the order from DNR to DNI-do not intubate-which means put him on ventilators and such. Phil went back to the NICU with the doctor and checked on Camden, watched him change the chart orders and had him read it aloud again to make sure we were on the same page.
 
Because he did so well on Tuesday, we decided to try feeding him again on Wednesday through an NG tube, a tube that goes through his nose down straight into his stomach. We only wanted to give him very small amounts at a time, so his body could learn to accept Heather’s milk. We fed him 1cc (1ml) milk at 3pm, after just 2 hours all the milk needed to be suctioned out from the back of his throat and nose. We were very devastated because we knew that if he could not feed on his own, we would not be able to bring him home with us. Heather and I then had a discussion with the doctor about Camden’s organs. On Monday, after he was born, they took x-rays of him to see what problems he had internally. After 30 minutes of talking with Camden’s doctor, my hope for his survival faded. The doctor was not able to clearly identify the placement of some of the organs because of their shape and location. Camden’s intestines were mostly positioned on his left side, while they should have been evenly distributed in his lower abdomen. This may be the reason for his inability to feed, there was most likely a blockage somewhere, but they would not do any further testing to find out specifics. They also would not place a feeding tube directly into his tummy because it required surgery and that was out of the question.  We were faced with a very difficult decision, but just wanted to give Camden a chance for survival. Logically, Heather and I both understood his fate, but emotionally we wanted him with us. After talking with the doctor, my hope faded for him, but I still wanted to give him a chance. While we were talking with the doctor, Camden had another apnea episode that lasted for a few minutes, the nurse helped him come back. It was apparent that his body was getting extremely tired of fighting to breathe. It just became more obvious to us that we needed to make the hard decision and bring him up to our room to be with us for the last moments of his life. We spent a few minutes by his bedside while the doctor went to make arrangements for Camden to come up to our room.
 
Camden was brought to our room shortly before 11pm Wednesday evening. On the way there the doctors had to resuscitate him twice to ensure that he would live from the short journey from the NICU on the 3rd floor to our room on the 4th floor. He came to us free of IVs, oxygen, and monitors. They had dressed him in a onesie that was floating on his little body, had placed a beautiful crocheted blue beanie on his head and wrapped him tight in his favorite blue chenille blanket holding a bunny that Vanessa, Heather’s sister, had given him. He was already looking a little yellow in the face and you could tell he was fading fast. The nurse placed him in Heather’s arms and my dad and brother were present to give him a final blessing. I asked Heavenly Father to bless him with comfort and peace that he would not suffer; we told Camden how much we loved him and again asked Heavenly Father to take him home to Him. My family left and Heather & I were alone with Camden. We held him and kissed his precious face and hands, looked at his little body and kept him warm. Around 11:10pm he started turning blue and was struggling to breathe. We knew he was leaving us and he looked so peaceful. Heather took some final pictures of me holding him. His coloring then turned pale and we knew he was gone. We were grateful he went quietly. I handed him to Heather and she held him for some time. Around 11:35 while Heather was holding him he began to breathe again, he sounded very congested and I ran to the door to ask a nurse for a suction bulb to help clear out his throat and nose. I held him endlessly for over 2 ∏ hours suctioning his airway and making sure he could breathe. Our little fighter was back and I was convinced he was trying to tell us he wanted to stay. Imagine our confusion and grief as he was struggling. We thought he was gone, and now I doubted our decision and wondered if we had been too rash in our choosing to bring him up to our room. I called his doctor in to talk with him. The doctor checked his heart rate and told us he was still with us, but it was very slow and weak. He told us that this was part of the dying process and that he couldn’t tell us how long it would take. I wanted to try and feed him again; I didn’t want him to suffer. The doctor reassured us that he wasn’t suffering, he had enough nutrients from his IV and was still hydrated, but agreed to go and get his pacifier and some of Heather’s breast milk for me to try and give him. Heather & I were not in agreement on whether we should try. She felt we already knew he couldn’t feed and didn’t want to risk him choking on it in our room. The doctor left us and I still felt hopeful that Camden wanted to stay and that if I could help him I would do anything. Heather got up from bed to use the bathroom and while she was gone Camden turned blue and started to leave us. When she came back to bed he was going. He finally went quietly, his little face peaceful. Our hearts were aching and oh so broken. I passed him over to Heather and went to my cot to weep for my son. Heather held him as the nurse came to confirm that he was gone. His little heart had finally stopped beating; he went home to his Father in Heaven. It was 3:30am, Thursday April 27th. Heather held him until 5am on her chest and then called the nurse in to take him away. She told us they would take pictures of him, get hand and footprints, and cut a lock of his hair and save all his belongings.
 
We are so grateful that we had those 3 short precious days with our beautiful son. We know that he was so special and chosen that he had more important work to do for our Father in Heaven and Savior, he was needed more there than to stay with us. We are grateful for eternal families, feel blessed that Camden chose us and know that we will see him again and that he is ours forever. We can’t wait to see him and hold him. We love him so much and miss him.
 
Sincerely,
 
Phil, Heather and Camden
phil@hotmesa.com , heather@hotmesa.com